Epilepsy Talk

The Trouble with AEDs | May 9, 2018

At the very best, finding the right anti-epilepsy drug is a crap shoot. There’s always the hope that this one will do it.

Or maybe adjunct therapy will work. Or, sigh, the side-effects derail you and you’re on to the next.

Is asking for seizure control too much?

The good news is that many newer AEDs are better tolerated than the older, standard AEDs. Although they, too, come with side-effects.

Newer AEDs often cause less sedation and require less monitoring than older drugs.

Although they are generally FDA-approved for use as add-ons to standard drugs that have failed to control seizures, they are often prescribed as single drugs.

Specific choices usually depend on your particular condition and the specific side-effects of the AED.

None has emerged as being superior to either standard or newer drugs.

All appear to offer some benefits, however, as with standard anti-seizure drugs, they all come with side-effects of their own.

But, until a cure for epilepsy is discovered, medical treatment is the only game in town. Unless you go for surgery or some of the newer intervention techniques.

So here’s the lineup of the most common AEDs, along with 4 exciting new meds.

Barbiturates: Phenobarbital (Luminal, Phenobaritone), is a barbiturate anticonvulsant.

And Primidone (Mysoline) is converted in the body to Phenobarbital with the same benefits and draw-backs.

It’s reported that Primidone is not as well-tolerated as Phenobarbital. In fact, some doctors believe that Primidone has no advantage over the other drug.

Uses: Barbiturates may be used to prevent Tonic Clonic Seizures (“Gran Mal”) or Partial Seizures. They are no longer typically used as first-line drugs, although they may be the initial drug prescribed for newborns and young children.

Side-Effects: Phenobarbital has fewer toxic effects on other parts of the body than most anti-epileptic drugs, and drug dependence is unusual, given the low doses.

However, because of the difficult side-effects, it’s less likely to be used over time than other drugs — including Phenytoin — another relatively inexpensive but effective drug.

Patients sometimes describe their state as “zombie-like,”with drowsiness, memory problems, coordination, hyperactivity (in children and the elderly), and depression (in some adults).

Note: Some controversy has arisen over studies indicating that children taking Phenobarbital score lower on intelligence tests, even for some months after going off the drug.

Carbamazepine (Tegretol, Equetro, Carbatrol)

Uses: An effective anticonvulsant and specific analgesic when used alone or with other drugs.

Carbamazepine also has the added benefit of relieving depression and improving alertness.

An extended release form is available that allows twice-daily dosing rather than 3 times a day. A chewable form makes it easier for children to take.

This drug is used to prevent the following seizures or epilepsy syndromes: Partial Seizures, (people tend to tolerate this drug better than others, although responses differ), Tonic Clonic Seizures, Nocturnal Frontal Lobe Epilepsy.

Side-Effects: Double vision, headache, sleepiness, dizziness, and stomach upset. These usually subside after a week and can be reduced by slowly titrating up on the dose.

Some people experience visual disturbances, ringing in the ears, agitation, or odd movements when drug levels are at their peak. Water retention can be a problem in older people.

The extended-release form of Carbamazepine (Carbatrol) may help reduce these symptoms.

Serious side-effects are less common but can include: Risk of birth defects, (especially if it is taken during the first trimester of pregnancy).

Severe skin reactions, including toxic epidermal necrolysis and Stevens-Johnson Syndrome which can cause skin lesions, blisters, fever, itching, and other symptoms.

(People of Asian ancestry have a 10 times greater risk for skin reactions than other ethnicities. The FDA recommends that they get a blood test prior to starting the drug to determine if the gene variant is present that increases this risk.)

Sometimes Carbatrol can worsen Generalized Seizures.

Hormonal changes, particularly higher levels of male hormones in both men and women, pose some risk for sexual dysfunction over time.

A decrease in white blood cells occurs in about 10% of those taking the drug. (This is generally not serious unless infection accompanies it.) Other blood conditions can arise that are potentially dangerous.

People should be sure to inform the doctor if they have any sign of irregular heartbeats, sore throat, fever, easy bruising, or unusual bleeding.

Long-term therapy can also cause bone loss (osteoporosis) in women and men, and it’s best to take preventive Calcium and Vitamin D supplements.

Children are at higher risk for behavioral problems.

Note: Citrus fruit, especially grapefruit, can increase Carbamazepine’s side-effects and should be avoided.

Clobazam (Onfi)

Uses: A benzodiazepine which affects chemicals in the brain that may be unbalanced in people with anxiety.

Onfi is used in combination with other medications to treat seizures caused by Lennox-Gastaut syndrome, a severe form of childhood epilepsy that also causes developmental and behavior problems.

Side-Effects: Fever, drowsiness, sedation, constipation, aggressive behavior, lethargy, ataxia, drooling, and irritability.

Other side effects include: Urinary tract infection, pneumonia, cough, bronchitis, insomnia, fatigue, decreased appetite, and increased appetite.

Eslicarbazepine Acetate (Aptiom)

Uses: An anticonvulsant that works by decreasing nerve impulses that cause seizures and pain. It’s used as a monotherapy and adjunctive treatment for Partial-Onset seizures.

Side-Effects: Aptiom can reduce the sodium in your body to dangerously low levels, which can cause a life-threatening electrolyte imbalance.

Other less serious side effects include tremors, a disturbance of equilibrium, blurred vision, vertigo, nausea, ataxia, dizziness, headache, drowsiness, sedation, abnormal gait, fatigue, visual disturbance, weakness, and malaise.

If you develop a severe skin rash, speak with your doctor as soon as possible.

Also, Aptiom can make birth control pills less effective.

Clonazepam (Klonopin), Diazepam (Valium), Lorazepam (Ativan), Clorazepate (Tranxene), Alprazolam (Xanax) 

Uses: Clonazepam is recommended for Myoclonic and Atonic Seizures that can’t be controlled by other drugs. Also for Lennox-Gastaut Syndrome.

It may be useful in newborns when other drugs are ineffective.

Although Clonazepam can prevent Generalized or Partial Seizures, people generally develop a tolerance to the drug, and then seizures can recur.

Side-Effects: People who have had liver disease or acute angle glaucoma should not take Clonazepam. Also, those with lung problems should be cautious.

Clonazepam can be addictive, and abrupt withdrawal has been known to trigger Status Epilepticus.

Other side-effects include drowsiness, imbalance and staggering. Also, irritability, aggression, hyperactivity in children, weight gain, eye muscle problems, slurred speech, tremors, skin problems, and stomach problems.

Ethosuximide (Zarontin)

Uses: Ethosuximide (Zarontin) is used for Absence Seizures (“Petit Mal”) in children and adults when the person has experienced no other type of seizures.

Ethosuximide succeeds in abolishing Absence Seizures in 60% of patients and controls them in up to 90%.

Side-Effects: Dizziness, headache, somnolence, anorexia, diarrhea, GI upset, nausea, vomiting.

Methsuximide (Celontin), a drug similar to Ethosuximide, may be suitable as an add-on treatment for intractable epilepsy in children without causing serious or permanent side-effects.

Side-Effects: Stomach problems, dizziness, loss of coordination, and lethargy. In rare cases, it has caused severe and even fatal blood abnormalities.

Periodic blood counts are recommended.

Gabapentin (Neurontin)

Uses: An effective add-on drug for controlling Complex Partial Seizures plus Secondarily Generalized Partial Seizures and is approved for adults and children.

It has also been somewhat successful in people with Resistant Partial Epilepsy. It is not useful for Generalized Absence Seizures.

Side-Effects: Toxicity is low, but there are side-effects such as sleepiness, headache, fatigue, and dizziness. Some weight gain has been reported.

Children may experience hyperactivity or aggressive behavior.

Gabapentin has no significant interactive effects when taken with other drugs. Long-term adverse effects are still unknown.

Gabitril (Tiagabine)

Uses: Used with other epilepsy drugs to treat Partial and some Generalized Seizures in adults and children who are at least 12 years old.

Side-Effects: Dizziness, fatigue, weakness, irritability, anxiety, and confusion.

Lacosamide (Vimpat)

Uses: Lacosamide is a unique medication for individuals with uncontrolled Partial-Onset Seizures.

Its primary advantages include the fact that it has no drug interactions, is dosed twice a day, and is effective.

The drug appears to work in a manner similar yet distinct to Phenytoin and Carbamazepine.

Lacosamide has an IV formulation, therefore it might be useful in emergency situations; but again, it has not been approved for use in this condition.

Side-Effects: Dizziness, headache, nausea or vomiting. Also, double vision, fatigue, memory and mood problems.

In rare cases, Lacosamide may affect internal organs, blood counts or heart rhythm, but these potentially serious side-effects are infrequent.

Lamotrigine (Lamictal)

Uses: Approved as add-on therapy for Partial Seizures, and Generalized Seizures associated with Lennox-Gastaut Syndrome.

Lamotrigine is also approved as add-on therapy for treatment of Primary Generalized Tonic-Clonic (PGTC) Seizures, in children aged 2 years and older, plus older adults.

It can be used as a single drug treatment (monotherapy) for adults with Partial Seizures.

Birth control pills lower blood levels of Lamotrigine.

Side-Effects: Common side-effects include dizziness, headache, blurred or double vision, lack of coordination, sleepiness, nausea, vomiting, insomnia, and rash.

Although most cases of rash are mild, in rare cases the rash can become Stevens-Johnson Syndrome, which is extremely dangerous.

The risk increases if the drug is started at too high a dose or if the patient is also taking Valproate. (Serious rash is more common in young children who take the drug than it is in adults.)

The rash is most likely to develop within the first 8 weeks of treatment.

Be sure to immediately notify your doctor if you develop a rash, even if it is mild.

Levetiracetam (Keppra)

Uses: This drug is approved as add-on therapy for Partial Onset Seizures in adults and children ages 4 years and older, Myoclonic Seizures in adults and adolescents ages 12 years and older who have Juvenile Myoclonic Epilepsy, Primary Generalized Tonic-Clonic Seizures in adults and children ages 6 years and older who have Idiopathic Generalized Epilepsy.

Levetiracetam appears to have fewer drug interactions than other anti-epileptic drugs and may be particularly useful for older patients.

Side-Effects: The most famous of these is “Keppra Rage” as well as severe aggression, irritability, anxiety, depression, and thoughts of suicide.

On the other side of the coin, you may experience sleepiness and fatigue, muscle weakness and coordination difficulties, headache, flu symptoms, dizziness, possible risk of a reduced white blood cell count, and a higher rate of infections.

Caution is advised for patients with kidney dysfunction.

Oxcarbazepine (Trileptal) — similar to Phenytoin and Carbamazepine but generally has fewer side-effects.

Uses: Approved as single therapy or add-on therapy for Partial Seizures in adults and for children ages 4 years and older.

Side-Effects: Stevens-Johnson Syndrome and toxic epidermal necrolysis. These skin reactions cause a severe rash that can be life-threatening.

Rash and fever may also be a sign of multi-organ hypersensitivity, another serious side-effect associated with this drug.

Oxcarbazepine can also reduce sodium levels. Make sure you have the sodium level in your blood checked regularly.

This drug can also reduce the effectiveness of birth control pills. Women who take Oxcarbazepine may need to use a different type of contraceptive.

Phenobarbital (Luminal)

Uses: This old-timer is very inexpensive and effective in a single daily dose.

Side-Effects: 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.

Phenytoin (Dilantin)

Uses: Phenytoin is effective for adults who have the following seizures or conditions: Tonic Clonic Seizures, Partial Seizures, Status Epilepticus, and it can be effective for people with head injuries who are at high risk for seizures.

This drug is not useful for the following seizures: Absence Seizures, Myoclonic Seizures, Atonic Seizures.

Side-Effects: The most dangerous is the risk of Stevens-Johnson Syndrome, a potentially life-threatening rash. Also, some people may develop a toxic response to normal doses, resulting in a coma.

Others, such as those with alcoholism, may require higher doses to achieve benefits.

Using Phenytoin in combination with newer add-on drugs can allow lower doses and may reduce some of the risks.

Other side-effects may include: Bone loss (from long-term use), gum disease, peripheral neuropathy, excess body hair, eruptions and coarsening of the skin. Also, weight loss, staggering, lethargy, nausea, depression, eye-muscle problems, and anemia.

An increase in seizures can occur as a result of high doses. There is an increased risk for birth defects and in rare cases, liver damage may develop.

People should definitely take preventive Calcium and Vitamin D supplements and exercise regularly to improve bone mass.

Pregabalin (Lyrica) — similar to Gabapentin

Uses: Approved as add-on therapy to treat Partial-Onset Seizures in adults with epilepsy. In clinical trials, half of the patients who received Pregabalin experienced a 50% reduction in seizure frequency.

Side-Effects: Dizziness, sleepiness, dry mouth, swelling in hands and feet, blurred vision, weight gain, and trouble concentrating.

Tiagabine (Gabitril) has properties similar to Phenytoin and Carbamazepine, and is also showing promise.

Uses: When added to treatment with another anti-epileptic drug,Tiagabine is sometimes effective in reducing Partial Seizures in children older than 12 years.

It seems to work better in controlling Partial Seizures in adults, either alone or when used with another antiepileptic medicine.

It is not helpful in reducing other types of seizures, such as Primary Generalized Seizures or seizures in children who have Lennox-Gastaut Syndrome.

Side-Effects: Evidence has reported some significant side-effects with its use, including dizziness, fatigue, agitation, and tremor.

At least one study suggested that it has more adverse effects than Lamotrigine and is not as well tolerated.

In February 2005, the FDA issued a warning advising that Tiagabine may cause seizures in patients without epilepsy.

It is only approved for use with other anti-epilepsy medicines to treat Partial Seizures in adults and children 12 years and older.

Topiramate (Topamax)

Uses: Topiramate is similar to Phenytoin and Carbamazepine and is effective and safe for a wide variety of seizures in adults and children.

It is approved as add-on therapy for patients 2 years and older with Generalized Tonic-Clonic Seizures, Partial-Onset Seizures, or seizures associated with Lennox-Gastaut Syndrome.

It is also approved as single drug therapy.

Side-Effects: Most side-effects are mild to moderate and can be reduced or even prevented by titrating up gradually on your dosage.

Serious side-effects may include glaucoma, decreased sweating, increased body temperature, kidney stones, sleepiness, dizziness, confusion, and trouble concentrating.

You should immediately notify your doctor if you have blurred vision or eye pain.

Topiramate may have fewer interactions with oral contraceptives than other AEDs.

Valproate (Depakene, Valproic Acid) and its delayed release form, Divalproex Sodium (Depakote), are anticonvulsants.

Valproate is the most widely prescribed anti-epileptic drug worldwide.

Uses: The first choice for patients with Generalized Seizures and is used to prevent nearly all other major seizures as well.

Side-Effects: These drugs have a number of side-effects that vary depending on dosage and duration.

Stomach and intestinal problems, which are experienced by nearly half of patients after starting the drugs may still occur after several years of use.

Divalproex Sodium (Depakote) has a lower risk for these side-effects than Valproate (Depakene).

Increased appetite with significant weight gain often becomes a problem and can be a major reason for noncompliance, particularly in young people.

Other side-effects include: Hand tremors, irritability, and hyperactivity in children. Temporary hair thinning and hair loss.Taking Zinc and Selenium supplements may help reduce the effect.

Young girls may develop secondary male characteristics, and premenopausal women are at increased risk for menstrual irregularities and polycystic ovaries, due to elevated male hormones. The effects are reversible.

(These side-effects also appear in women using other anti-epileptic drugs, but the risk from Valproate appears to be higher.)

Studies have reported symptoms of Parkinson’s Disease preceded by hearing loss in people who have taken it for more than a year, but they were reversible when the drug was withdrawn.

Valproate poses a higher risk for serious birth defects than many other AEDs. These birth defects include skull and limb deformities, in addition to brain, heart, and lung problems.

Women of child-bearing age should use a different type of anti-epilepsy drug than Valproate. If it is used, it should be prescribed at the lowest possible dose.

Cases of pancreatitis, a serious and even life-threatening inflammation in the pancreas, have been reported in children and adults taking Valproate. (It is still very rare, however.)

Valproate and Divalproex Sodium are not usually recommended for young children because of an unusual, but potentially fatal, toxic effect on the liver.

This very rare effect is most likely to affect children under 2 years of age who have birth defects and are taking more than one anti-seizure drug.

Some doctors recommend monitoring blood levels for liver function once prior to administering Valproate or Divalproex Sodium, monthly during the first 6 months, and then periodically after that.

Children with epilepsy who take Valproic Acid may eventually develop some problems in the kidney, although they are generally not significant.

Symptoms of Toxic Side-Effects in Liver or Pancreas: Take careful note of abdominal pain, nausea or vomiting, loss of appetite, lethargy, acute confusion, water retention, easy bruising, and yellowish skin coloring.

Zonisamide (Zonegran)

Uses: A unique drug that blocks sodium and calcium channels and may have nerve-protecting properties.

It’s approved as add-on therapy for adults with Partial Seizures, and studies indicate it’s often effective against Infantile Spasms (West Syndrome) and Myoclonic Seizures.

Side-Effects: Increases the risk for kidney stones, which can be reduced with increased fluid intake and citrate.

It has also been associated with reduced sweating and a sudden rise in body temperature, especially in hot weather. Children are especially at risk for this side-effect, which can be serious. (The drug has not been approved for children.)

Other side-effects tend to decrease over time and include dizziness, forgetfulness, headache, weight loss, and nausea.

Less Commonly Used AEDs

Felbamate (Felbatol) is an effective anti-seizure drug. However, after reports of deaths from a serious blood condition known as aplastic anemia or from liver failure, Felbamate is recommended only under certain circumstances.

They include severe epilepsy, such as Lennox-Gastaut Syndrome or as monotherapy for Partial Seizures in adults when other drugs fail.

Vigabatrin (Sabril) is a chemical called Gamma-Vinyl GABA. It was designed to increase the brain levels of the enzyme that inhibits seizure activity.

It has serious side-effects, however, and is generally prescribed in the U.S. only in certain cases, such as in low doses for patients with Lennox-Gastaut Syndrome.

Overseas, it is also used for Partial Seizures and as first-line therapy in children with Infantile Spasms (West Syndrome).

Between 10-30% of people on long-term treatment have developed irreversible visual disturbances, including reductions in acuity and color vision.

Men are at higher risk for this side-effect than are women.

Further studies are needed to determine the extent and severity of this complication, particularly in children.

There is a slight risk for depression or psychosis when Vigabatrin is used as add-on therapy, and particularly if the drug is administered too quickly.

These risks are far lower if the drug is used as sole therapy.

Newer Drugs:

Brivaracetam  (Briviact)

Uses: A cousin to Keppra and an add-on treatment to other medications for treating partial onset seizures in patients age 16 years and older with epilepsy.

Side-Effects: The most common side effects reported by people taking Briviact  includes drowsiness, dizziness, fatigue, nausea and vomiting.

Ethotoin (Peganone)

Uses: Alone or in combination with other medications for the control of Tonic-Clonic (Grand Mal) and Complex Partial (Psychomotor) seizures in adults and children.

Side-Effects: You should not use this medication if you have liver disease or a blood cell disorder. Unusual bleeding, weakness, and infection can occur.

Fycompa (Perampanel)

Uses: Adjunctive treatment for Partial-Onset Seizures with or without Secondarily Generalized Seizures in patients with epilepsy age 12 and older.

Side-Effects: Dizziness, sleepiness, fatigue, irritability, falls, nausea, problems with muscle coordination, problems walking normally, vertigo and weight gain.

Serious or life-threatening psychiatric (mental) problems were also seen more frequently in patients treated with Fycompa.

Rufinamide (Banzel)

Uses: An add-on treatment for children age 4 and older and adults with the Lennox-Gastaut Syndrome. This syndrome can include seizure types such as Atonic (drop) Seizures, Tonic (stiffening) Seizures, Myoclonic (brief jerking) Seizures, or Absence (staring) Seizures, as well as Partial Seizures.

Side-Effects: Do NOT use Rufinamide if you have or a family member has a history of certain heart problems, or you have severe liver problems.

Sudden or worsened depression, anxiousness, restlessness, irritable behavior or panic attacks are a possibility.

Older AEDs: Some older but less effective drugs may still play a role against epilepsy.

Acetazolamide (Diamox)

Is sometimes used against common types of seizures, but patients quickly develop a tolerance for it.

It still may be useful when drug interactions are a problem, when a rapid effect is required, or when an additional drug is needed for a short time.

Trimethadione (Tridione) is effective for Absence Seizures, but has very serious side-effects, and its use is severely limited.

 

To subscribe to Epilepsy Talk and get the latest articles by email, simply go to the bottom box of the right column and click on “Follow”

Other articles that may be of interest:

Anti-Epilepsy Medication Side-Effects  https://epilepsytalk.com/2011/09/07/anti-epilepsy-medication-side-effects/

Medication Conflicts https://epilepsytalk.com/2011/11/22/epilepsy-medication-conflicts/

Epilepsy Glossary  https://epilepsytalk.com/?s=glossary

 

Resources:

http://www.umm.edu/patiented/articles/what_specific_medications_used_epilepsy_000044_7.htm

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

http://health.nytimes.com/health/guides/disease/epilepsy/medications.html

http://www.drugs.com/fycompa.html

http://www.drugs.com/mtm/peganone.html

http://www.drugs.com/cdi/rufinamide.html

http://www.webmd.com/epilepsy/tiagabine-for-epilepsy

https://www.drugs.com/aptiom.html

https://www.drugs.com/onfi.html

https://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/uc


36 Comments »

  1. hi, i recently started to take onfi instead of depakote. I also take trileptol. After i switch to onfi, my depression’s gone, i feel more energetic and happy. But onfi cost sooo much. With my insurance, i have to pay 33% of monthly cost, which comes up to $743.00/month. I don’t think i can afford it for too long, given i don’t work, cause of too many seizures (like several/month) and only my husband who works. But onfi really good!!! I don’t feel any side effects, or they so mild, i never pay attention to them, my seizures instead of 4-5/ month now 2-3/month. So its %50 less. I afraid to drop this drug, which i eventually will.

    Like

    Comment by lena GORDON — May 9, 2018 @ 10:17 AM

  2. A masterpiece- thank you so much for the comments! Now to just get the doctors to have this material memorized before they go on over-drugging patients.!

    Like

    Comment by Karen — May 9, 2018 @ 12:38 PM

  3. I was given Primidone while weaning off Clonazepam, but opted not to take it. Mainly because of the side effect of possible Catatonic Schizophrenia. I have been through most of them or given an option, but I found out I was allergic to some inactive ingredients in the pills I was on back in 2016, when Aptiom interacted with all of the other meds I was on(Lyrica, Levetiracetam, Topiramate, and Clonazepam). I switched to the liquid forms of Levetiracetam and Topiramate after I found out and talked to my pharmacist, as I never knew liquids existed of these. I finished weaning off Clonazepam daily back in December. It was really tough to come off the pills, I had to have my Functional Medicine aunt take over the weaning process of Clonazepam. I am currently weaning off Topiramate because of side effects. I had the rare side effect of Raynaud’s phenomena. I usually get Rare and unlisted side effects of medications. Vimpat gave me stroke-like symptoms when I tried it. brand Keppra and Keppra XR made my legs fall out from under me. I don’t remember what happened with me when it came to Lamictal, but I had a side effect to that too. I was on Tegretol as a child until I went to my first adult neurologist and she said Trileptal was “Adult Tegretol.” It didn’t work out for me, and Aptiom is also a spin-off of Tegretol like Trileptal was. Being both were brands, I had a horrible time with Aptiom. My previous neurologist tried to increase my Levetiracetam first(I had breathing problems and itching from the increase), but then tried adding it making me be on 5 prescriptions! With just the 400MG tablet I had vivid nightmares as a first sign, then I developed shortness of breath and heart palpitations when it came to increasing it to 800mg. I had that neurologist go slow by taking 600mg in between because I was afraid of side effects. It does recommend this slow increase in the prescribing info on the website. I nearly committed suicide due to overmedication and allergic reaction, yet the neuro and his nurse practitioner didn’t think it was allergy because I didn’t have hives. It took bloodwork from a local ER to see that I was allergic because I had a high eosinophil level. Clonazepam gave me Sinus Tachycardia/fast heartbeat and some irregular heartbeats, along with vertigo, and moderate backup during the weaning process because of physical dependency. I’m almost off my Topiramate compound, but it’s been stalled because I need an EKG. I have gotten swelling and rash, along with conjunctivitis during the process so far. More back-up too. I went back to taking the Psyllium husk powder to help it.

    Like

    Comment by trekkie80sgirl — May 10, 2018 @ 5:29 PM

  4. GREAT! How are they working for you?

    Like

    Comment by Phylis Feiner Johnson — May 10, 2018 @ 9:27 PM

  5. I have been on Mysoline for years. Have only had one grand mal in the last 30 yrs. Which was 14 yrs ago. I do have partials but they only started when Mysoline was taken off the market for a while and I had to go onto other meds. I believe it messed up the balance.

    Liked by 1 person

    Comment by Michelle — May 11, 2018 @ 2:58 PM

  6. But it’s great that you found something that works.

    Congratulations! You’re one of the lucky few.

    Like

    Comment by Phylis Feiner Johnson — May 12, 2018 @ 10:50 AM

  7. Until reading your site ,I had no idea that that what I had were myoclonic seizures . I used dilantin for years until a neurologist switched me to lamontragine. I now have a blurry situation while walking , if I look at the ground I cannot focus on it and any imperfection there causes me to stumble. I have been threatened by a neurologist to pull my driving licence if If I try altering my dosage yet a Neuro surgeon tells me that I am allowed to drive as I-am completely aware and have lost none of my ability to react. Who is right ? Until my drug was changed by the neurologist I did not talk to any Dr. For over 30 years I was told by any Dr. who renewed my prescription that my licence would be pulled if I had another one . In defence of all the Drs much has been learned since I was first diagnosed. And much has changed in the knowledge of the brain. The main concern I have is I have had to discontinue my hobbies of hiking in the backcountry alone.

    Sent from my iPad

    >

    Liked by 1 person

    Comment by wally.venechuk@gmail.com — May 13, 2018 @ 4:56 PM

    • I would never drive in any system of doubt.

      Although I have been seizure free for 8 years, I drove my car into the back wall of my garage, recently.

      So, everything is not perfect, even if you think it’s ok.

      Like

      Comment by Phylis Feiner Johnson — May 15, 2018 @ 10:37 AM

  8. Phylis Feiner Johnson, with this post that speaks of the trouble associated with anti-Epilepsy drugs, would it not be better to find natural treatments for Epilepsy? If all or most anti-Epilepsy drugs have the potential for adverse side-effects, why not rely on natural treatments whenever and wherever possible? Even though seizure control is important, what if the medication being used is resulting in more harm than good?

    Like

    Comment by Jeffrey Liakos — June 4, 2018 @ 5:53 PM

  9. Phylis Feiner Johnson, more harm than good is referencing the unwanted side-effects. Not the benefits provided by the medication itself.

    Like

    Comment by Jeffrey Liakos — June 5, 2018 @ 3:26 PM

  10. Phylis Feiner Johnson, one of my problems is an occasional case of short-term memory loss. Has this been an issue for you at all? What about some of the more disturbing side-effects that are reported to happen as a result of using these medications?

    Like

    Comment by Jeffrey Liakos — June 6, 2018 @ 11:49 AM

  11. Phylis Feiner Johnson, maybe I am being too hard on myself, however, I find myself feeling irritated when I have a hard time remembering my medication. I remember to ask, however, my memory is finicky in some ways.

    Like

    Comment by Jeffrey Liakos — June 7, 2018 @ 10:41 AM

  12. Phylis Feiner Johnson, being a guy, I don’t use a purse. However, I am sure to take my medicine twice daily. However, the only other downside of the medication is bone density loss. There was that one foot fracture that I mentioned to you. Not too long after that, I had 2 fractures in my hand, then I fractured my foot again. After the latest fracture, I was discovered to have developed Osteoporosis.

    Like

    Comment by Jeffrey Liakos — June 7, 2018 @ 2:10 PM

  13. Phylis Feiner Johnson, if Anti-Epilepsy prescription drugs are proven culprits for the cause of Osteoporosis, what is the problem with pursuing natural remedies to treat Epilepsy instead? What if the medications, even if they do help, also have negative long-term effects? This may sound more likely to be a detriment than a solution, however, what if natural remedies and healthy diet are more beneficial than medication alone?

    Like

    Comment by Jeffrey Liakos — June 7, 2018 @ 5:26 PM

    • I think that a healthy diet and supplements are a help, but they’re not a cure.

      P.S. I will be off-line for the next 3 days, celebrating my birthday.

      So, if I don’t get back to you right away, please be patient.

      Like

      Comment by Phylis Feiner Johnson — June 7, 2018 @ 6:08 PM

  14. Phylis Feiner Johnson, happy birthday! Hope that it is one of the best ever.

    Like

    Comment by Jeffrey Liakos — June 7, 2018 @ 7:51 PM

    • Thanks. I’m turning the big 65!

      My cousin is coming to celebrate, then on Tuesday, we’re going to stay in a “tree house” in Bucks County, NJ.

      So you see, I won’t be patrolling the website actively for a whole week! 🙂

      Thanks for your good wishes, Jeffrey…

      Like

      Comment by Phylis Feiner Johnson — June 7, 2018 @ 8:00 PM

  15. Phylis Feiner Johnson, be sure to enjoy plenty of dessert and maybe some of your favorite coffee. Dessert is a definite must.

    Like

    Comment by Jeffrey Liakos — June 7, 2018 @ 8:58 PM

  16. You bet! 🙂

    Like

    Comment by Phylis Feiner Johnson — June 8, 2018 @ 8:37 AM

  17. Phylis Feiner Johnson, I try to go easy on dessert in general, however, I really like pumpkin pie. That is always a popular dessert item in my book.

    Like

    Comment by Jeffrey Liakos — June 10, 2018 @ 6:25 PM

  18. I will be sure to do so!

    Like

    Comment by Jeffrey Liakos — June 26, 2018 @ 8:30 PM

  19. Hi, Phyllis,
    Have you heard of bedwetting as a side effect of any AED (especially, Aptiom)? I have read that bedwetting in adults with epilepsy is fairly common, so it may not be drug-related at all. Just curious….

    Like

    Comment by Martha — August 12, 2018 @ 2:37 PM

  20. I know that, as you say, bed wetting with epilepsy is not unusual, but I don’t think it’s associated with Aptiom.

    The most frequently reported adverse reactions in adult patients receiving APTIOM as adjunctive therapy at doses of 800 mg or 1200 mg were dizziness, somnolence, nausea, headache, diplopia, vomiting, fatigue, vertigo, ataxia, blurred vision, and tremor.

    https://www.sunovionprofile.com/sp/aptiom/about/aptiom-overview.html/?utm_source=google&utm_medium=cpc&utm_term=eslicarbazepine%20acetate&utm_campaign=gs-generic%20alone_ph&gclid=CJHdosSd6NwCFSSDswodldsPYg&gclsrc=ds

    Like

    Comment by Phylis Feiner Johnson — August 12, 2018 @ 3:21 PM

  21. Phylis Feiner Johnson, I hope that you are blessed with many more birthdays to come. I also know of the trouble with anti-epilepsy drugs. Short-term memory loss is a problem for me.

    Like

    Comment by Jeffrey Liakos — August 12, 2018 @ 4:21 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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