Epilepsy Talk

Anti Epilepsy Drugs and Their Side-Effects | January 30, 2010

For people with epilepsy, Anti Epilepsy Drugs (AEDS) are the most common method used to control seizures. Although there are more than 40 different types of epilepsy, the right medication or combination of medications can usually control seizures.  However 30% of people are drug resistant, owing to either their gene factors or biological makeup.

The most important consideration in your treatment is identifying the exact type of epilepsy you have, therefore you may want to consult more than one doctor.

Medications prescribed will also depend on factors such as which side effects you can actually tolerate, other illnesses you may have, and how the drug should be taken.

It may take several months before the best drug and dosage are determined for you. After all, medicine is more of an art than a science.  And finding the right combination can literally be a crap shoot.  I know for me and many others, it took many months to get it “right.”

However, during this adjustment period, you must be carefully monitored with frequent blood tests to measure your response to the medication.

It’s also essential that you note any side effects you experience, (keeping a daily diary is good for this) whether it’s related to health, behavior, or moods.  And please be sure to share these with your doctor, so he can get an accurate picture of what you’re going through.

One more mantra: KEEP YOUR DOCTORS’ APPOINTMENTS!  Whether it’s a diagnostic test, follow-up or regular progress report.  These appointments are necessary to see if the drug is working for you…how your body is tolerating it…and if you are at risk for serious side effects or complications.

Here’s a list of some of the most common drugs currently used to treat epilepsy:

Banzel (Rufinamide Inovelon in Europe): Banzel is approved as an add-on treatment for children age 4 and older and adults with the Lennox Gastaut Syndrome (see http://www.epilepsy.com/EPILEPSY/epilepsy_lennoxgastaut ). This syndrome can include seizure types such as atonic (drop) seizures, tonic (stiffening) seizures, myoclonic (brief jerking) seizures, or staring (absence) seizures, as well as partial seizures. Common side-effects include headache, dizziness, fatigue and sleepiness, double vision and trembling. People who have a heart rhythm irregularity, should not take Banzel.

Depakote (Depakene, Valproate, Valproic Acid): Depakote is considered one of the most effective medications for treating generalized seizure types such as partial, absence, and generalized tonic-clonic seizures. Some of the common side effects include 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.

Dilantin (Phenytoin): Dilantin is used to control partial seizures and generalized tonic-clonic seizures. It also can be given intravenously in the hospital to rapidly control active seizures.  Interestingly, Dilantin is the most prescribed AED by general physicians in the U.S. but less so among epilepsy doctors, because of its side effects. Common side-effects are unsteadiness and moderate cognitive problems, dizziness, fatigue and slurred speech. There are also long-term potential cosmetic (body/face hair growth, skin problems), and bone problems (osteoporosis). Phenytoin can also cause a rare and dangerous rash called Stevens-Johnson syndrome.

Felbatol: Felbatol treats partial and some generalized seizures. Side-effects include decreased appetite, weight loss, inability to sleep, headache, and depression. In rare cases, the drug can cause bone marrow loss or liver failure. Therefore, use of the drug is limited.  And if you are taking it, you must have blood cell counts and liver tests regularly.

Gabitril: Gabitril is used with other epilepsy drugs to treat partial and some generalized seizures. Common side-effects include dizziness, fatigue, weakness, irritability, anxiety, and confusion.

Keppra (Levetiracetam): Keppra is one of the more used medicines in seizure clinics because it’s usually effective for a broad-spectrum of seizures types.  It has a relatively low incidence of causing thinking/memory problems and has no drug interactions. The most common side-effects are dizziness, fatigue and insomnia, but the more troublesome problem can be irritability and mood changes. This may occur to some degree in up to a third of those taking the medicine.

Klonopin (Clonazepam):  Klonopin is in the  same family as Valium (Diazepam), Ativan (Lorazepam), Tranxene (Clorazepate), Xanax (Alprazolam). They are often used in the emergency room to stop a seizure and are effective in short-term treatment of all seizures. Tolerance usually develops within a few weeks, so the same dose has less influence over time. Klonopin appears to be more long-acting against seizures than Valium or Ativan. Side-effects of Klonopin include tiredness, unsteady walking, nausea, mood changes, loss of appetite and addiction.

Lamictal (lamotrigine): Lamictal treats partial and some generalized seizures, but it may not be as effective for myoclonic seizures.   Its side-effects include dizziness, fatigue, insomnia and mild cognitive (thinking) impairment. In rare cases, it can cause Stevens-Johnson syndrome which poses a dangerous risk if not treated immediately. Doses should be increased slowly to avoid any complications.  Lamictal is also used for mood stabilization.

Ativan (lorazepam): Ativan is similar to Clonazepam in dosage and action, but it is not as long-acting. It is usually used as a ‘rescue medication’ for patients who frequently have clusters of seizures. It works reasonably quickly when taken orally and the anti-seizure effect lasts for 2-6 hours. An Ativan concentrate, 2 mg per ml, can be taken as 1 ml liquid under the tongue in urgent situations.

Lyrica (Pregabalin): Lyrica is used to treat partial seizures and chronic pain of certain types.  A relative of gabapentin, it may work better, and can be given twice a day. Some believe that it is more effective against seizures than gabapentin.  The good news is that it has no drug interactions  Side-effects include dizziness, sleepiness, dry mouth, peripheral edema, blurred vision, weight gain, and difficulty with concentration and attention.

Neurontin (Gabapentin):  Neurontin is used with other epilepsy drugs to treat partial and some generalized seizures. It has the reputation of being a safe but not particularly powerful AED. The effectiveness criticism probably is because it’s often prescribed at too low a dose.  Side-effects include unsteadiness, weight gain, fatigue and dizziness, but are rarely lasting.  Neurontin is also often used for chronic pains of certain types.

Phenobarbital (Luminal): This old-timer is very inexpensive and effective in a single daily dose.  Unfortunately, side- effects include sedation, thinking/memory problems and depression. Phenobarbital can also cause long-term bone problems. It’s mildly addictive and requires slow withdrawal. And it is not suitable for pregnant mothers because there is a significant rate of birth defects.

Sabril (Vigabatrin): Sabril has been used for over a decade in many countries, and it is effective for partial seizures.  It also may be very effective for infantile spasms, a serious type of seizures in young children. Release in the U.S. was delayed because the drug is toxic to the retina of the eye in up to 30% of people who take it long-term. This toxicity can result in permanent loss of peripheral vision. Regular vision testing is recommended for all people on this drug.

Tegretol (Carbamazepine or Carbatrol):  Tegretol is the first choice for partial, generalized tonic-clonic and mixed seizures. Long-acting forms can be given once a day.  Potential side-effects include nausea, dizziness, fatigue, weight gain, blurred vision, low blood counts and low blood sodium.  In a few percent of people, Tegretol can cause a rash, sometimes even the dangerous Stevens-Johnson syndrome. People of Asian descent with HLA-B*1502 antigen are more at risk.

Topamax (Topiramate): Topamax can be used as a general AED to suppress seizures or in combination with other drugs to treat partial or generalized tonic-clonic seizures.  Side-effects include sleepiness, dizziness, speech problems, nervousness, memory problems, visions problems and weight loss.

Trileptal (Oxcarbazepine): Trileptal is slightly different from Tegretol, however it is at least as effective in treating partial seizures and may have fewer side-effects, except for more risk of low blood sodium, fatigue, dizziness, headache and blurred vision.

Vimpat (lacosamide): Vimpat is a new entry into the AED arena, first introduced in 2009. It’s effective for partial and secondarily generalized seizures. Side-effects include dizziness, headache, nausea or vomiting, double vision, fatigue, memory or mood problems.  In rare cases, Vimpat may affect internal organs, blood counts or heart rhythm, but these potentially serious side-effects are infrequent.

Zarontin (ethosuximide):  Zarontin is used to treat absence seizures.  Adverse effects include nausea, vomiting, decreased appetite, and weight loss.

Zonegran (zonisamide): Zonegran is used in combination with other drugs to treat partial seizures. It’s similar in its coverage to Topamax with side-effects including drowsiness, dizziness, unsteady gait, kidney stones, abdominal discomfort, headache, and rash.

Another article of interest:

Anti-epilepsy drugs can cause inflammations http://www.medicalnewstoday.com/releases/270543.php

To subscribe to Epilepsy Talk and receive notifications of new posts by email, simply go to the bottom of the right column and click on where it says “Sign me up”!

Resources:

http://www.epilepsyfoundation.org/about/treatment/medications/index.cfm

http://my.epilepsy.com/node/985267

http://www.webmd.com/epilepsy/medications-treat-seizures


72 Comments »

  1. Please keep up the great jon you have been succesfuly doing all this time.
    For some of us, talking about this menace, Epilepsy, has been a some of us came to know the hard way!!!!
    Thank you for speaking for those who can NOT speak for themselves.
    Your information has became the source of hope for our misery, Epilepsy.
    God bless you & your hard work.
    Gerrie
    http://www.myspace.com/myseizures

    Like

    Comment by Gerrie — January 30, 2010 @ 2:04 PM

  2. Dear Gerrie,

    Sometimes I feel like I’m whistling in the dark with this website. It is so much work. (I gave up my “day” job as a freelance promotional writer to do this.) But when people like you respond, it makes it so rewarding and worth while.

    Thank you…from the bottom of my heart.

    Like

    Comment by Phylis Feiner Johnson — January 31, 2010 @ 4:32 AM

    • Dear Phylis,
      In my last grand Mal seizure just a week ago, I suffocated myself in bed for three days. With lost memory from my seizures & my medications of 600mg/day of Dilantin, I can barely function.
      That’s why I didn’t even get to reread my comments before I posted them on this page.
      As you can see my comments were messy & I apologize for the mess.
      AGAIN, I’m pleased to know, ANGELS of your kind are doing everything they can to uplift my broken brain & some times my broken heart & spirit.
      THANKS A MILLION!!!!
      Wishing you all the best.
      Gerrie
      http://www.myspace.com/myseizures

      Like

      Comment by Gerrie — January 31, 2010 @ 9:40 AM

    • Sheeeeesh, Phylis, you’re the first human I came into contact with (yes, a phrase ending in “with”) who told me what to ASK to get answers to my questions, and then you ANSWERED almost all of my questions, to boot! What would most of us have DONE if not for you?

      Like

      Comment by meesher — December 24, 2014 @ 6:47 PM

  3. Hi Gerrie,

    It sounds like you have had a rough time. I am sorry to hear that you suffocated in bed. Your comments are clear as a bell.

    I am on 5 medicines for my epilepsy: Keppra, Mysoline, Neurontin, Lamictal and clonazepam.

    Sometimes, I have trouble getting around too.

    I am so glad Phylis made this website for all of us.
    Get better!!
    Ruth

    Like

    Comment by Ruth Brown — January 31, 2010 @ 10:04 PM

  4. Hi Gerrie,

    I looked up your website. You have really bad spikes in your EEG. My spikes use to be like that. Mine have calmed down with the changes in medicine. Some of your EEG was calm.

    i did not know that John Travolta’s 16 year old son had died. That is sad.

    I noticed that you said that I have to have a subscription. Do I have to pay for that? How does it work? You are educating people and that is good.
    Ruth

    Like

    Comment by Ruth Brown — January 31, 2010 @ 10:24 PM

  5. If you’re talking about this website, no, you are already a subscriber by participation. No $$$ needed. Your words are valuable in and of themselves.

    Like

    Comment by Phylis Feiner Johnson — January 31, 2010 @ 10:39 PM

  6. Hi Ruth,
    Thank you for your understanding of my struggle & plight. And, thank you for sharing your kind heart.
    I’m glad you appreciated MySeizure videos, to educate society of our struggle with epilepsy.
    This unpredictable & invisible demon, Epilepsy, had turned my life upside down, as you can see it on my seizure videos. I lost my everything for Epilepsy.
    In the last 10 years, I tried Keppra, Lamictal & now 600mg/day of Dilantin.
    While the side effects of the medications have been compromising my memory, making me confused, disoriented & walk around town like a zombie, my seizures never seem to stop.
    Therefore, I’m counting on FUTURE brain surgery, i.e if there’s any future at all with this nightmare.
    Ruth,
    Thanks to Phylis, who understands our struggle with this menace, for creating this site, we are coming together to fight back this nightmare.
    UNITED, I hope & pray that we get to find a solution.
    Wishing you all the best.
    Gerrie
    http://www.myspace.com/myseizures
    PS:Subscription is just getting connected to site.

    Like

    Comment by Gerrie — February 1, 2010 @ 8:54 AM

  7. Hi Gerry and Phylis, Sorry I left a minute ago. I had a seizure and I am now in my wheelchair. Sometimes I can walk on my own, need a walker or in this case my wheelchair.

    I do not consider epilepsy a Demon. There are worse disabilites like cancer, Alzheimers or Parkinson’s.

    We are UNITED in our struggle with epilepsy. Phylis is a great help.

    You are on the medicine merry-go-round. That is when the doctor is trying to get the right combination for you.

    I finally have the right combination, but stress has set in and that causes seizures. So does photosentivity to light.

    You might consider a VNS before brain surgery. It is successful for a lot of people. Talk to your neurologist about what is best for you.

    Ruth

    Like

    Comment by Ruth Brown — February 1, 2010 @ 11:38 AM

    • Factoid: Did you know that 25 percent of people with primary generalized epilepsy are photosensitive?

      Ruth, sorry you’re feeling so crummy. Hope today is a better day.

      Like

      Comment by Phylis Feiner Johnson — February 1, 2010 @ 9:15 PM

  8. Dear Ruth,
    Sorry to hear about your last seizure.
    But, you seem to be managing them just fine.
    In fact, I admire your upbeat outlook that Epilepsy can BE manageable & there are far more worst predicaments than Epilepsy.
    Dear Ruth,
    Ten years of grand Mal seizures, visiting various neurologists & trying but failing various medications is wearing me out & frustrating me.
    That’s why I’m thinking about brain surgery, even though, I’m NOT even sure if brain surgery is going to be the answer to my prayers.
    I have discussed brain surgery with my Neurologist, but the date for my brain surgery has NOT been set yet.
    Therefore, I will visit my Neurologist soon & see what other option are available.
    Like you said, VNS is one of those options I would like to discuss with my Neurologist & see what he has to say.
    Dear Ruth & Phylis,
    I’m sorry if I made feel down, it just has been a very painful journey.
    Thank you for caring to write & uplift my soul.
    Phylis, Thanks for providing us the forum to discuss our medical problems.
    Regards,
    Gerrie
    http://www.myspace.com/myseizures

    Like

    Comment by Gerrie — February 1, 2010 @ 12:46 PM

    • Gerrie,

      Don’t worry about making us feel “down” that’s why we’re here…to help. And please, do explore all options (even a second opinion) before surgery.

      Like

      Comment by Phylis Feiner Johnson — February 1, 2010 @ 9:20 PM

  9. Hi Gerrie,
    You do not have to apologize for what happens in your life. Some of my journey has been painful too.

    I have had epilepsy for 60 years now. I always keep a positive attitude. I hope you will too.

    Other options are the Ketogenic Diet and the GARD diet. A lot of people feel that nutrition is the way to go. Ask your doctor to be referred to a nutritionist about those options.

    I believe that brain surgery is the last resort.
    Ruth

    Like

    Comment by Ruth Brown — February 1, 2010 @ 7:21 PM

  10. Dear Ruth,
    Thanks for your words of experience, wisdom & encouragement.

    I can see you know a lot about Epilepsy treatment.Sixty years of Epilepsy may have given you the opportunity to know a lot about seizures & Epilepsy treatments.
    Thank you for sharing your experience with me, a very important advice on how to cope with Epilepsy.
    I never knew anything about Epilepsy, until I start having seizures just 10 years ago.
    Even then, I refused to accept that I’m becoming Epileptic & I desperately tried to deny & cover-up my fate, though it became impossible to cover up the seizures.
    Frustrated, I asked my Neurologist I need brain surgery to stop this nightmare, even though deep inside my heart, I wasn’t sure of what I’m talking about.
    Even now, I’m NOT sure if brain surgery is going to stop my seizures.
    But after 10 years of trying various dozes of Lamictal, Keppra & Dilantin & constantly living with the side effects of these medications to only end-up having more seizures, desperation is forcing me to seek brain surgery, as if brian surgery is the magic bullet to my misery.
    I agree with you, brain surgery should be the last resort to treat Epilepsy.
    Therefore, I will continue to try ALL other treatments & Diets before brain surgery.
    Dear Ruth,
    You already make me feel better.
    Thank you for sharing your heart & your wisdom.
    Regards,
    Gerrie
    http://www.myspace.com/myseizures

    Like

    Comment by Gerrie — February 1, 2010 @ 8:21 PM

  11. Hi Gerrie, I am glad to hear that you are going to try all other options first.

    That is the smart thing to do. Brain Surgery is a serious operation. I personally would never consider it. It is up to you what you decide.

    Phylis, thank you for the percentage of people with epilepsy are photosensitive. I am one of the 25%.

    Gerrie, keep a positive attitude and outlook on life.

    Ruth

    Like

    Comment by Ruth Brown — February 2, 2010 @ 3:54 AM

  12. Ruth,
    Thanks for friends like you, I’m learning a lot from your experience. To be honest with you, I’m afraid going through the brain surgery, though I’m desperate to stop my seizures. I guess, I’m going to have to try anything possible before the sergury though.
    Ruth,
    It just very hard being knocked out with seizures & try to keep positive attitude.
    But, with friends like you & Phylis lifting my broken soul, it seems possible.
    Thank you for letting me cry on your shoulders.
    I already feel better.
    Keep up the great job.
    Regards,
    Gerrie

    Like

    Comment by Gerrie — February 2, 2010 @ 4:57 AM

  13. Hi Gerrie,

    It is hard for me to go through seizures. I was diagnosed when I was 6 years old. I told everyone, that was in 1949. I only had abscence (petit mals) seizures then. My grand mals (tonic clonics) started when I was 21.

    I always told everyone all of my life that I have epilepsy. That makes me feel better. I am not hiding it. That would make me feel worse and depressed. Do not let your video make you depressed.

    Feel free to cry on our shoulders anytime. That is why Phylis is here. I have cried on her shoulders, as well.

    Like

    Comment by Ruth Brown — February 2, 2010 @ 7:19 AM

  14. Ruth & Pylis,
    Could you please help this young girl victim of Epilepdy with crucial questions regarding brain surgery by following the link.
    Thank you.
    HERE Question is,,,
    If I have Generalized Siezures can I still be a Candidate for brain surgery?
    Although i havent had much tests done there pretty sure i have generalized
    siezures. And they have changed my Medicine three times (tried upping the
    does …

    Like

    Comment by Gerrie — February 2, 2010 @ 7:15 PM

    • If I have Generalized Siezures can I still be a Candidate for …
      Although i havent had much tests done there pretty sure i have generalized
      siezures. And they have changed my Medicine three times (tried upping the
      does …
      http://www.epilepsy.com/blogentry/987551

      Like

      Comment by Gerrie — February 2, 2010 @ 7:16 PM

  15. I looked up your link. She is 14 years old and was diagnosed with Juvenie Myoclonic Epilepsy July 1, 2009. She is only pretty sure she has generalized seizures. No facts!!

    Myclonic seizures are quick little jerks of the arms. They are sometimes followed by a tonic-clonic seizure. They can be followed by abscence seizures. It is well controlled with medication.

    It begins betwwn late childhood and early adulthood, the time of puberty. Only 7% of all epilepsy is JME.

    At my epilepsy.com Go to Home: All About Epilepsy & Seizures too types of seizures. It is in the pink box on the left. You can learn about any type of epilepsy. You will educate yourself.
    Ruth

    Like

    Comment by Ruth Brown — February 2, 2010 @ 8:45 PM

  16. Since JME is well controlled with medication, I would be surprized if any doctor would consider her a candidate for surgery. She is too young to make that decision.

    You also said that they changed her medicine 3 times. After 60 years of epilepsy, my medicine has been changed so many times that I have lost count. I am on Mysoline for my arm jerking.

    Like

    Comment by Ruth Brown — February 2, 2010 @ 8:56 PM

  17. My daughter is on Lamictal for the past 8yrs. Her szrs. are not completely controlled but manageble. Recently she was throwingup and can not keep any food or water in, later we realized it is the side effect of Lamictal. We are planning on changing the medication. She gets partial complex szrs. I welcome any suggestions.
    Thanks.
    Tara.

    Like

    Comment by Tara Kumar — February 27, 2010 @ 3:33 AM

    • Sigh. Tara, I wish I could offer suggestions. (I would if I could!)
      But #1. I’m NOT a doc.
      And #2. After endless trial and error, Lamictal (and Klonopin) was the one thing that did work for me.

      I’m afraid it’s a process of trial and error. Anyone who has had epilepsy for a long time can sadly attest to that. The very best of luck to both of you. I wish I could help.

      Like

      Comment by Phylis Feiner Johnson — February 27, 2010 @ 8:27 PM

      • Hi, im now on lyrica and lamictal. I will try clonazepam (onfi), I will have to decide which med to drop. Have you tried lyrica with clonazepam?

        Like

        Comment by jennifer — January 25, 2012 @ 8:13 PM

  18. Hi Tara, you said that you realized that it was the Lamictal that was causing her to throw up.

    Have you asked her neurologist? Something else might be causing that problem. Ask her regular doctor, as well.

    After 8 years of being on Lamictal, it may or not be the Lamictal.

    Do not change her medicines without talking to her neurologist.

    Let us know what the doctors find out and say. We care and are concerned for you.
    Ruth

    Like

    Comment by Ruth Brown — February 28, 2010 @ 1:54 AM

    • Hello Ruth,
      My daughter had lost more than 20lbs. and we went to the doctor and they thought it is the reflex making her throw up and prescribed Zantac and she was hospitalized at that time for dehydration and when they released from the hospital she was still in the same condition and they said it might take few days for the zantac to work. After we came we searched on “lamictal and throwing up” and we got the answer. we used give her medicine along with the food. We also realized when we give her with banana and leave 2hrs.( we stated with 4hrs.) before feeding her anything. Immediately the next day she stopped throwing up and after 2 months she is back to her size and eating fine. When we told the neurologist he could not believe and he told us to do what works for us. But she is sleeping a lot and having 2 to 3 mild szrs. almost every day. We have an appointment on 4th, and we talk to the neurologist and decide what to do.
      Thanks.
      Tara.

      Like

      Comment by Tara — March 2, 2010 @ 3:24 PM

  19. Tara, although I have no answer for the seizures, I think the banana idea was brilliant! I remember whenever I had to take anything especially odious, I would either eat yogurt before (to coat my stomach) or a banana which is usually very user-friendly. Keep us posted about the doc’s appointment. And GOOD LUCK!!!

    Like

    Comment by Phylis Feiner Johnson — March 2, 2010 @ 8:25 PM

  20. Hi Tara,

    Bananas have a lot of potassium. Maybe, she was lacking in that.

    Whenever, I start throwing up, I take Pedialyte. You can buy it over the counter. It is oral electrolytes. Potassium is one of the electrolytes that we need. One fourth cup is all you need.

    One time I was so low in potassium that the ER had to give it to me intravenously.

    Like

    Comment by Ruth Brown — March 2, 2010 @ 10:51 PM

  21. Hello everybody,
    Without going into too much history. I am like most of us,having had every MRI & EEG & all other tests in the last 15 years here in Canada.I`m on a heavy dose of Tegretol,Epival & sometimes Cloneazapam which has stopped the siezures.My problem is now in the last month that I suffer from the occasional heavy bout of double vision and dizziness. I don`t just mean a bit. I can`t see anything correctly without putting my hand over one eye with double images whilst the room spins!I have to stop my job as a machinist and sit down for a long time & it doesn`t go away! It fades gradually over 3 or 4 days. Now I`m going to loose my job soon I just know it.I`m spending all of my free time searching the i-net for answers but no luck & my doctor doesn`t have an answer either except wanting to take away my licence. Has or is anyone been through this stress and also do you have any cure weather it be homepathic or herbal I`ll try anything! Nick

    Like

    Comment by Nick Osgood — August 16, 2010 @ 3:53 AM

  22. Hi Nick…my heart goes out to you…

    According to WebMD: Tegretol or Carbatrol (carbamazepine) has common side-effects of fatigue, vision changes, nausea, dizziness, rash.

    Clonazepam or Klonopin may cause drowsiness, sleepiness, fatigue, poor coordination, unsteadiness, behavior changes. (For me, it’s more of an anti-anxiety drug, but it does make me sleepy.)

    However, the intricacies for Epival (Divalproex)are sort of scary. http://www.drugs.com/cons/epival.html#GXX01 said that: “When you are taking valproic acid, valproate sodium, or *** Divalproex, it is especially important that your health care professional knows if you are taking any of the following:

    Acetaminophen (e.g., Tylenol)Amiodarone (e.g., Cordarone)
    Amitriptyline and nortriptyline
    Anabolic steroids
    Anticoagulants
    Aspirin
    ***Carbamazepine (e.g., Tegretol) Carmustine (e.g., BiCNU)
    Dantrolene (e.g., Dantrium)
    Daunorubicin (e.g., Cerubidine)
    Disulfiram (e.g., Antabuse)
    Ethosuximide
    Etretinate (e.g., Tegison)
    Mercaptopurine (e.g., Purinethol)
    Methotrexate (e.g., Mexate)
    Methyldopa (e.g., Aldomet)
    Naltrexone (e.g., Trexan) (with long-term, high-dose use)
    Phenothiazines (acetophenazine [e.g., Tindal], chlorpromazine [e.g., Thorazine], fluphenazine [e.g., Prolixin], mesoridazine [e.g., Serentil], perphenazine [e.g., Trilafon], prochlorperazine [e.g., Compazine], promazine [e.g., Sparine], promethazine [e.g., Phenergan], thioridazine [e.g., Mellaril], trifluoperazine [e.g., Stelazine], triflupromazine [e.g., Vesprin], trimeprazine [e.g., Temaril])

    The amount of valproic acid, valproate sodium, or divalproex that you need to take may change. Other anticonvulsants (medicine for seizures)—There is an increased risk of seizures or other unwanted effects.

    Among “less common side-effects,”they mention:”behavioral, mood, or mental changes; ***blurred vision; confusion; *** continuous, uncontrolled back-and-forth and/or rolling eye movements; earache, redness or swelling in ear; *** dizziness, *** double vision; faintness, or light-headedness when getting up from a lying or sitting position suddenly…” http://www.drugs.com/cons/epival.html#GXX01#ixzz0wmO2jvl6

    This is confirmed at http://www.epilepsynl.com/drugs/divalproexsodium.html where they say “Other drugs used to treat seizures such as phenytoin (Dilantin), ***Carbamazepine (Tegretol), phenobarbital (Luminal, Solfoton), felbamate (Felbatol), lamotrigine (Lamictal), ***Clonazepam (Klonopin), and others may increase or decrease the effects of divalproex sodium and may themselves have increased or decreased effectiveness.

    If you experience any of the following serious side effects, stop taking divalproex sodium and seek emergency medical attention: ***double vision or back-and-forth movements of the eyes…”

    I’d say you have some dangerous side-effects going on, plus the possibility of complicated interactions, too.

    This is clearly not the combo for you. Epilepsy is bad enough, who needs this torment?

    Perhaps you should seek a second opinion or, at the very least, visit your doc armed with your dose amount, times taken and incidence of symptoms. A daily seizure diary might be useful for this.

    Unfortunately, I only have one eforum recommendation for a neurologist in Canada, that is Dr. Marika J. Hohol, St. Michael’s Hospital, Toronto, Ontario.

    Please consider what I said and let me know how you do… Best of luck to you!

    Like

    Comment by Phylis Feiner Johnson — August 16, 2010 @ 10:58 PM

  23. Hi Nick,

    I highly recommend a second opinion from another GP or neurologist. Something is definetly wrong.

    Like

    Comment by Ruth Brown — August 17, 2010 @ 1:47 AM

  24. Thank you all for your current advice.My 3 medications previously specified are prescribed by my neurologist & @ the rate of his opinion. Now I agree that as I haven`t had a siezure for over 5 years now that it would be beneficial if he were to reconsider the rates perhaps.I am due to see him @ the beginning of November for my annual check-up & blood test.This would confirm my requirements I`m sure.However,I mentioned my current problem & he keenly wanted to change my current medication to something different & that makes me pretty scared as I would quite possibly be returning to the siezure days once again.Then last time I saw my family GP & she seemed to think that it may be a blood pressure drop.So I have been doing some self help by the traditional head between the knees for a while when it happens & taking walks @ lunch break. Who knows if this is the right approach or not.Thanks again once again. Please keep in contact.
    Nick Osgood

    Like

    Comment by Nick Osgood — August 18, 2010 @ 7:23 AM

    • Dear Nick,

      Wouldn’t a change in meds be a better recource than what you’re going through now? I see your point in wanting to stick with “the devil you know rather than the one you don’t know….”

      But there are lots of new AEDs out there and I personally think a switch could be worth it. After all, it took me some time to finally find my own “magic med mix.”

      However, it IS possible that your blood pressure is playing a part in all this and what you are experiencing are physiologic nonepileptic seizures which are being mis-diagnosed and over medicated.

      According to the Epilepsy Foundation: “Physiologic nonepileptic seizures are caused by a variety of conditions that can be the result of sudden changes in the blood supply to the brain or in the sugar or oxygen levels in the brain. These include changes in heart rhythm (cardiac arrhythmia), sudden drops in blood pressure (syncopal episodes), or very low blood sugar (hypoglycemia).

      Other physical conditions, such as sleep disorders and movement disorders, may have symptoms or episodes associated with them that can look like seizures. It is important to get these sorted out by a physician.”

      Just something to think about. Also, you might want to consult with a new neurologist to get re-tested for your seizure activity.

      Like

      Comment by Phylis Feiner Johnson — August 18, 2010 @ 8:05 PM

  25. Hi Nick,

    Exercise is always a good approach. We need exercise for our general health. I also believe it helps lessen our seizures.

    I recently found out that one of the meds I was on, was one that the main ingredient I am allergic too. That is Mysoline. It is phenobarbital. My neurologist cut me back and I am doing fine. I hope this helps.

    Like

    Comment by Ruth Brown — August 18, 2010 @ 12:08 PM

  26. Hi, a while back in the comments, Phylis you said that it took a while to get the “magic mix.”

    After some 61 years, I finally have it. I am tired but my seizures are under control, pretty much. They will never be completely under control.I am not being rushed to the ER anymore.

    I do not remember everything I said in my comments to you Nick. You said that it is hard to have a positive attitude. I have had status seizures and I was in a coma one time. My positive attitude got me through these difficult times.

    Have a V-EEG done to find out exactly what type of seizures you are having. It will show it up.

    Like

    Comment by Ruth Brown — August 18, 2010 @ 10:01 PM

    • Well, that was certainly a long haul Ruth…but it shows what perseverence…a positive lifestyle…and good attitude can do. I’m proud of you!

      Like

      Comment by Phylis Feiner Johnson — August 19, 2010 @ 12:43 AM

      • Hi Everyone

        This is just a test. I had trouble posting yesterday. Love Candi

        Like

        Comment by Candi — August 19, 2010 @ 9:10 PM

  27. Your suggestion worked, Phylis. 🙂

    Nick, I am on Phenobarbital & have been for over 20 yrs. It does control my seizures, except for breakthrus which were due to missed meds. Anyway, about 10-15 yrs ago, I was having my BP cheked & complained to the nurse that my arm hurt/felt numb. She took one look at the meter & ran out of the room & returned w/ the DR. I was immediately hospitalized. Test were run. EKG, EEG,blood work, etc. Everything came back normal. The DR had no answers for me & was ready to release me. While he was signing the paperwork, I got to talking w/ my Nurse. I asked if my meds &/or supplements could have caused the Low BP. He read his PDR & came back w/in seconds w/ an answer. YES! Pheno’s have this ‘rare’ side effect. Now, I have had LBP more then once, yet still far & few between, that I know of. I had heart tests w/in the last 5 yrs. Everything was 95% A-OK. But, I still have bouts of Low BP & have to tell my new Docs the reason. 🙂 Last mth, I stood up & started weaving. I should have sat down, but, was determined to go ‘lay down’ I was feeling sooo strange. After about 10 steps my knees turned to gel & I crashed. I felt my eyes roll back & heard my friend approaching to help me up. I made it to my couch & collapsed for about 15 min. Then, made it to my room. I slept. Then, several days later, I had an appt. I felt fine. But, guess what, my BP was Low again. I told the DR about the ‘episode’ & that I suspected seizure activity. My first myoclonic was what I was thinking. He asked if I started ‘shaking’. When I told him no, he claimed it wasn’t a seizure. Well Shoot, now I know, My Family Doc, an Internalist, is Ignorant about Seizures. Do I educate Him or find another Doc? 🙂

    Sorry for ramblin. Just wanted you to know that some meds do have ‘rare’ side effects that our DRS are unaware of. A pharmacist should always be consulted B4 taking OTC meds w/ our meds. As Phylis noted, already. 🙂 HUGS!

    Love Candi

    Like

    Comment by Candi — August 19, 2010 @ 9:34 PM

    • Hey Candi…WELCOME! It’s GREAT to have you here.

      Since you do have a vast reservoir of knowledge, you could TRY to educate your doc. But should that really be YOUR job?

      There’s a neurologist that was highly recommended by eforum members, based upon positive personal experiences: Dr. David Labiner, University of Arizona, AZ

      Is he within your reach?

      Like

      Comment by Phylis Feiner Johnson — August 20, 2010 @ 2:40 AM

      • Hi Phylis, Sorry it took so long to reply. Still learning how to ‘get around’ on your site. Guess I finally ‘learned’. 🙂 Anyway, No I ain’t anywhere near UA. 😦 And I like the PA who works w/ my Doc. She graduated a few yrs ago from University of Utah & is more up to date on everything. In fact, she was the 1 who confirmed my Bowel ‘episodes’ Mite be linked to EP. (Yeh, I know, Messy Subject. :))

        I Agree! It shouldn’t be my job to educate any DR, but, after yrs of experience w/ ‘ignorance’ (including my own)I do go fore-armed w/ my knowledge. And I have learned to keep my Mouth Shut when they say something ‘Stupid’ :)& Save my questions/concerns for my PA Neuro.

        HUGS! Love Candi

        Like

        Comment by Candi — August 23, 2010 @ 5:21 PM

  28. I have severe problems with pheobarbital. I never thought that it might be causing my BP to go down. I was considered allergic to pheno about 30 years ago. That far back I did not remember that little fact.

    I had shaking and tremors and my neurologist put me on Mysoline which is Pheno. I found out about 2 weeks ago and called up my neurologist. He did not know that I was allergic to it. He cut me back to 4 a day.

    I have learned at the hospital that I have to have my head elevated, raised a little bit, to prevent more seizures. When I have a seizure or aura, my husband helps me to the easy chair that is padded with side arms.

    Then when it is over, he helps me to bed to sleep. Otherwise I can have more seizures in my sleep.

    Candi, it is all right to talk as much as you need to. Sometimes, my replies are short and sometimes they are long.

    Like

    Comment by Ruth Brown — August 20, 2010 @ 1:38 AM

  29. Ruth, maybe you should keep a med history log (meds taken with reactions, meds that just plain didn’t work and meds that were successful — for whatever duration.)

    Then you can go armed with the list to your docs and pharmacist and make sure they know the score.

    Like

    Comment by Phylis Feiner Johnson — August 20, 2010 @ 2:43 AM

  30. I will from now on. I did not have a support group 30 years ago to tell me that I should keep a journal about my seizures, meds and whatever else I needed to put down.

    Like

    Comment by Ruth Brown — August 20, 2010 @ 3:24 AM

  31. See how much we help one another? 🙂

    Like

    Comment by Phylis Feiner Johnson — August 20, 2010 @ 4:07 AM

    • Hello again Phylis,
      Thank you for your input on my particular problem to what was supposed to be easily solved in the various AEDs on the market.It is very encouraging to find support for the first time at a level of understanding such as the one that I require.Before that you mentioned the terminology of physiologic nonepileptic seizures, I had a sort of feeling that my severe dizziness & double vision could be a sort of spin off 🙂 from the original siezure conditions of the past to a new type of siezure condition.Saying that although my Gran Mal & P.Mals have been done with for about 5 years now, this new condition is either the drug interaction as many of the internet sites show,including the one that you kindly showed.To a “new” type of siezure, due to my system having now become used to my daily dosage routines & is able to resist their principles & overcome their benefits.As I mentioned before I don`t usually discuss my epilepsy problems with my family doctor unless forced into a corner,as this subject isn`t really her forte & it all becomes a waste of time plus I end up loosing my drivers licence to protect her name,as happened during my siezure control years.However,my neurologist here in London Ontario is an ace dude in my opinion he has never let me down once & has a great manner.But even ace dudes dont like being quoted terms such as physiologic nonepileptic seizures from their patients during interviews.So I will have to think about how to gently approach him with this statement of self opinion when we next meet up because as from todays writings you can see that I have confindence in this new approach.I will be doing some further research this weekend. Thank you.
      Nick

      Like

      Comment by Nick Osgood — August 20, 2010 @ 8:17 AM

      • That’s the spirit Nick! 🙂 Education about Epilepsy & all it’s aspects (Including Treatments) tends to be a never-ending, always-learning experience. But, Thanks to the Internet & trusted Sites we now have access to that info. I’ve been working w/ others for over 15 yrs & am Still learning. Each of us is ‘unique’ in what we experience w/ EP & meds, but, Knowledge is Power! 🙂

        Love Candi

        Love Candi

        Like

        Comment by Candi — August 23, 2010 @ 5:36 PM

  32. Hi Nick, if your doctor does not like the term physiologic non epileptic seizures, you might try the term NEAD (non epileptic attack disorder). Your doctor might find that a more friendly term.

    My seizures have changed and evolved over the 61 years of epilepsy. A few years ago I was diagnosed with NEAD. I have both epilepsy and NEAD.

    Like

    Comment by Ruth Brown — August 20, 2010 @ 10:24 PM

  33. Nick, rather than starting with the conclusion, I think you should explain your exact symptoms with your doc and the side-effect information you’ve come up with. Then talk about the nature of the seizures: how they affect you before, during and after and see what HE thinks.

    As you know, epilepsy can be an ever-changing, “evolving” condition and I think together (especially since you have such a good relationship)you and your doc can come up with a solution.

    Like

    Comment by Phylis Feiner Johnson — August 21, 2010 @ 11:38 PM

  34. Nick,

    I agree 100% with Phylis.

    Like

    Comment by Ruth Brown — August 22, 2010 @ 12:38 AM

    • Thank you ladies. All your support is much welcome here. Meanwhile I just lived through another blasted Monday spinning out of control with two visual images for 4hrs on & then 4 hrs off & now on again @ supper time. Let me know if the typing is correct 🙂 I am researching a source for phosphorus such as Brewers Yeast & is it safe currently to use with my meds, as this is supposed to assist with the old dizzys. But I will check it out thoroughly before proceeding.

      Like

      Comment by Nick Osgood — August 24, 2010 @ 7:25 AM

      • Nick —

        Could the dizzy spells be a blood sugar issue? Just a possibility.

        Perhaps you should have your glucose and blood levels checked.

        Like

        Comment by Phylis Feiner Johnson — May 24, 2011 @ 1:59 PM

  35. Hi Nick, if you are seeing visual imagaes you need to tell your doctor. Write down exaclty what happens when these episodes occur, how oftenm how far apart, and when the dizzy spells occur.

    My son has dizzy spells. He takes fruit, like raisins, dried fruit or regular food. That gets tid of his dizzy spells. Yours might be something else. See your doctor.

    Like

    Comment by Ruth Brown — August 24, 2010 @ 10:20 AM

  36. Hi, anyone know of sideaffects with lexapro with lyrica or lamictal? My Dr wants to put me on it for anxiety.

    Like

    Comment by jennifer schnegg — May 24, 2011 @ 11:36 AM

  37. Jennifer, I am sorry that I do not know. I am on Lamictal, but I am not on Lexapro or Lyrica.

    I saw my opthmalogist, yesterday, and he showed me the films. There is a growth in the back of my right eye. It was noticed by my optometrist, 14 years ago. It has grown and is growing. My opthamologist is getting my films from 14 years back. Can one of my seizure meds cause this?

    I am on Neurontin, Lamictal, clonazepam, mylosine, Keppra and Lorazepam prn.

    Or could it be from my diabetes, retinopathy of the eye?

    Like

    Comment by ruth brown — May 24, 2011 @ 1:10 PM

    • My uneducated guess is that it’s because of your diabetes.

      My cousin Bruce, who had Juvenile Diabetes, had continuing problems with his eyes and your situation sounds somewhat similar.

      It’s good that you’re taking care of your eyes and that the opthamologist is caring and carrying through with your films.

      Once he gets them back and compares them, I’m sure he can tell you the prognosis and what can be done.

      Like

      Comment by Phylis Feiner Johnson — May 24, 2011 @ 2:25 PM

  38. I am an obssessive worrier. I told my Dr. the things I obssess over. I know its not logical, but I worry anyway.

    She says its called Generalized Anxiety Disorder.

    Yes, everyone worries, but mine are many unreasonable anxieties. Im willing to try a drug for it, but I want to know the affects of how well it works.

    One hears of anxiety drugs with the possability of suicidal thoughts. Im not depressed, by no means.

    Since I have no boyfriend, which was my backbone so to speak, I notice these anxieties more.

    I have anxieties over money, new places, getting lost, new people, my things that I care about die, or break). These things stress me. Yes, everyone worries about these things, but not to the point that it just overtakes you and one cant let go these feelings.

    Many of these, I have learnt to lessen the stresses of them, but it is still there.

    Like

    Comment by jennifer schnegg — May 24, 2011 @ 1:48 PM

  39. I have tried to increase doses of the meds I take, by just half of an additional pill, but it causes, dizzyness, and crossed eyes. I have tried changing the times I take my meds, with of course Dr. approval first. So now we are going to try an anxiety meds.

    Like

    Comment by jennifer schnegg — May 24, 2011 @ 2:26 PM

  40. You know Jennifer, I think you could benefit from some talk therapy with a real psychiatrist who could balance your epilepsy and anxieties with the best meds. (Well, that’s what’s been my saving grace…)

    Also, you have to do things to help YOURSELF.

    There’s your music. See “How Music Soothes Your Seizures”

    https://epilepsytalk.com/2010/06/30/how-music-soothes-your-seizures-2/

    Progressive Muscle Relaxation

    https://epilepsytalk.com/2009/12/05/super-seizure-de-stressor/

    Consider support groups…deep breathing… yoga…meditation…cultivating more friends…or even training your kitty to do tricks.

    No, I’m not nuts. Arthur — who has killer neuropathy — is doing this with Lucy to cheer himself up and she LOVES it. It’s called “tricks and clicks” (at least that’s what he calls it) and there’s loads of books out there on the “technique” which is not at all difficult!)

    Arthur bought “Cat Training in 10 Minutes” along with the clicker

    http://www.amazon.com/Cat-Training-Minutes-Miriam-Fields-Babineau/dp/0793805309/ref=sr_1_1?ie=UTF8&s=books&qid=1306246863&sr=1-1

    It really helps take his mind off his misery and gives him lots of laughs! 🙂

    Like

    Comment by Phylis Feiner Johnson — May 24, 2011 @ 2:55 PM

  41. Phylis, I think you are right about my eye. It is my diabetes. After 12-14 years of having that growth, no opthamologist has done anything for it. Maybe nothing can be done. I will just wait to go blind in one eye.

    Sometimes, I cannot read big letters. Sometimes the films that they show me look black.

    You say Arthur has “killer neuropathy.” Is he dying from his neuropathy? I hate to ask that question.

    I know this is not a diabetes support group, but what affects my diabetes affects my epilepsy. They do not get along in the brain. That is why I am having seizures on my right side.

    Like

    Comment by ruth brown — May 24, 2011 @ 5:26 PM

    • First answer…
      Do you know that you can enlarge the type font on your computer screen by pressing Ctrl +

      Second: Arthur’s not dying from his neuropathy, but he’s in terrible pain and is very limited in his mobility, driving, activities, etc. And we know, it will never go away. We’ve been to every kid of doc on the planet, plus the neurosurgeon to the stars (Eagles football team)at Penn. So now, he’s getting prolotherapy, an alternative treatment, plus he takes lots of meds. It’s a raw deal. 😦

      Like

      Comment by Phylis Feiner Johnson — May 24, 2011 @ 6:43 PM

  42. […] Anti Epilepsy Drugs and Their Side-Effects « Epilepsy TalkJan 30, 2010 … Comment by Nick Osgood — August 16, 2010 @ 3:41 +00:00Aug. Reply. Hi Nick…my heart goes out to you… According to WebMD: Tegretol or … […]

    Like

    Pingback by Nick osgood | Instituteofwor — August 1, 2011 @ 8:12 AM

  43. Phylis, I am now on 50 mg of Lamictal, recently dropped from 100. I swear I’m having withdrawal symptoms. Most identifiable is queasiness during the few hours before my levels rise after I take my dose in the morning. For a while, my muscles were sort of restless and this subsided for the most part by the end of 1.5 weeks. I get an edge of it, but it’s not driving me crazy anymore. I’m also feeling a bit more scattered – a bit like a helium balloon. I get tired for a couple of hours and then get my energy back about the time the queasiness lifts. It’s weird, because I’m more present to connect with people on the lower dose and way more happy. I am sleeping beautifully. Does the world of neurology/pharmacology acknowledge Lamictal withdrawal aside from the (revenue-generating) risks like seizure? I have read some accounts of personal withdrawal experiences similar to mine, but I can’t find anything “official”. I’m wondering how long these symptoms are going to last and I’m now dreading the thought of reducing the dose again. And, I’d like to know what is causing these symptoms. One of the great things about Lamictal is that it did not cause nausea as a side-effect. But, it’s obviously causing nausea as I withdraw.

    Like

    Comment by Polly Pierce — October 23, 2011 @ 6:04 PM

  44. According to GSK: “Lamictal should be tapered over a period of at least 2 weeks (approximately 50% reduction per week).” Our rule of thumb: decrease the dosage at the same rate you increased it. Otherwise as slowly as you can. 25–50mg a day every week until you’re down to 100mg a day, then 25mg a day per week.”

    (That sounds like a contradiction to ME.)

    “If a decision is made to discontinue therapy with LAMICTAL, a step-wise reduction of dose over at least 2 weeks (approximately 50% per week) is recommended unless safety concerns require a more rapid withdrawal.

    Discontinuing carbamazepine, phenytoin, phenobarbital, primidone, or other drugs such as rifampin that induce lamotrigine glucuronidation should prolong the half-life of lamotrigine; discontinuing valproate should shorten the half-life of lamotrigine.”

    http://www.drugs.com/dosage/lamictal.html

    In other words, I don’t have an answer. And my research didn’t give me a straight answer either.

    My suggestion: have your doctor do a blood level check.
    It could be that you have to titrate OFF of Lamictal more slowly.

    I hope this helps in some way…sorry I don’t have a more concrete answer.

    Like

    Comment by Phylis Feiner Johnson — October 23, 2011 @ 7:10 PM

    • Thanks Phylis. I’ve never experienced withdrawal from a neuro-drug in the past. I DO know that I am extremely sensitive to meds. If I know what I know now about myself and the medical industry I think I would have been more cautious about going on this drug 12/13 years ago. Lamictal is surely miraculous for some people, but I wish I’d never gone on the drug. Physical symptoms like nausea caused by withdrawal make me nervous since the drug itself does not cause nausea. I’m working with an ND and a neurologist to support a more holistic approach to how I address medical issues.

      Like

      Comment by Polly Pierce — October 23, 2011 @ 7:22 PM

      • Personally, I think an ND is a BRILLIANT idea. Let me know how it works out.

        (I used to write for an alternative medicine client!)

        Like

        Comment by Phylis Feiner Johnson — October 24, 2011 @ 1:06 PM

  45. I visit day-to-day some sites and blogs to read posts, however this webpage presents quality based
    writing.

    Like

    Comment by erotyka — May 17, 2013 @ 7:00 PM

    • Thanks so very much for the compliment, erotyka. All positive input is welcome! 🙂

      If you’d like to subscribe to Epilepsy Talk and receive notifications of new posts by email, simply go to the bottom of the right column and click on “Sign Me Up!”.

      Like

      Comment by Phylis Feiner Johnson — May 17, 2013 @ 7:15 PM

  46. Hi all-
    We have only begun our journey with our baby son who was diagnosed with Infantile Spasams at 4montgs. He is now 17months old and is still having seizures after failing multiple drugs to try and help control his seizures. I applied for a medical marijuana card to obtain CBD oil, to find out I can purchase Charlottes Web CBD oil via Internet because it is approved by the FDA. Plus, the dispensing places seem to carry an inconsistent strain and suppliers that put their CBD oil in a Glycerin base rather than something like MCT oil that fits his Ketogenic diet. James is developmentally delayed in many ways. While medications can cause delays amount other problems, seizures are also damaging him. Seizures can be so sudden he can get hurt quickly & we are still searching for a way to help control them. Some days it can be depressing to not have him sitting up, crawling, playing, communicating, feeding himself or interacting with us. We have a supportive stroller that seems to be helping his back & that too is an adjustment to lug around. It looks like a wheelchair and its heavy. We applied for a handicapped decal so we can park where there is room for us to get it in & out of our vehicle. People look at us with sadness in public. We are hopeful, yet trying to mentally cope & prepare for our future in being able to afford financially & physically care for him. Every time there’s a new medicine we try and learn from others experiences as to what we may expect for our baby who cannot really tell us about side effects, etc. sharing information seems to help calm the ‘unknown’ that comes with epilepsy. Please continue to share for those of us exploring for answers & solutions while not always having the ability to share!! 😍

    Like

    Comment by Cinthia Van Alst — December 23, 2015 @ 9:20 AM

  47. Your experience sounds so painful. I wish I had a magic solution that would make it all better and go away. 😦

    Like

    Comment by Phylis Feiner Johnson — December 23, 2015 @ 11:08 AM

  48. My 22 year old son has been experiencing seizures for about a year. A few a month. His symptoms are absence seizures but he goes unconsious (to sleep) standing and his legs give out and he falls then his teeth chatter and muscles go rigid starting from his upper body traveling to his legs and feet. He cannot see a doctor for diagnosis and treatment as he has no medical insurance. He recently came to live with me and had a seizure I was there for and I now give him low doses of gabapentin (300 mg) and xanex .25 twice a day (its all I have here to help him) and so far he has not had another seizure. I am hoping it continues to work for him until he might someday get medical insurance to see a doctor. Be blessed.

    Like

    Comment by Laura — August 6, 2017 @ 12:10 PM

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      Like

      Comment by Phylis Feiner Johnson — August 6, 2017 @ 9:37 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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