Epilepsy Talk

The Four Stages of Seizures – Prodromal, Auras, Ictal and Postictal | January 18, 2016

Welcome to the world of ictals and postictals. A world you’re probably familiar with.

Seizure Phases

A seizure often has four distinct phases: Prodromal Symptoms, Auras, Ictal and Postictal Stages.

The first phase — the prodromal stage — involves mostly emotional signals.

In an aura, alterations in activity, emotions, hearing, smell, taste, visual perception are involved.

The seizure itself is the ictus.

There are two major types of seizure: partial and generalized.

What happens to the person during the seizure depends on where in the brain the disruption of neural activity occurs.

Following a seizure, the person enters into the postictal state.

Drowsiness and confusion are commonly experienced during this phase.

Let’s start at the very beginning…

PRODROMAL SYMPTOMS

This prodromal group of symptoms occurs days or hours before a seizure ensues.

It’s different from aura in that it includes symptoms like:

Affection

Depression

Difficulty concentrating.

Ecstatic feelings

Headache

Increased agitation

Insomnia

Irritability

Lightheadedness

Mood changes

AURAS

Auras are actually a small partial seizure that is often followed by a larger event.

They usually come a few seconds to a few minutes before the actual seizure.

It’s the beginning of the seizure and is seen mostly in partial seizures.

The feelings of the aura are often vague and many patients are unable to describe their features.

There may be:

Biting of tongue (from teeth clenching when muscles tighten)

Blinking of eyes, eyes may move to one side or look upward, or staring

Convulsion (person loses consciousness, body becomes rigid or tense, then fast jerking movements occur)

Change in skin color (looks pale or flushed)

Difficulty talking (may stop talking, make nonsense or garbled sounds, keep talking or speech may not make sense)

Difficulty breathing

Dreamlike experiences

Dressing or undressing

Drooling

Feelings of extreme fear

Hallucinations

Heart racing

Inability to swallow

Lack of movement or muscle tone (unable to move, loss of tone in neck and head may drop forward, loss of muscle tone in body and person may slump or fall forward)

Losing control of urine or stool unexpectedly

Movements of hands, like wringing, playing with buttons or objects in hands, waving

Non-purposeful movements, called automatisms, involve the face, arms or legs, such as lip smacking or chewing movements

Pupils may dilate or appear larger than normal

Repeated purposeful movements (person may continue activity that was going on before the seizure)

Rigid or tense muscles (part of the body or whole body may feel very tight or tense and if standing, may fall “like a tree trunk”)

Sensations in the stomach

Sweating

Tremors, twitching or jerking movements (may occur on one or both sides of face, arms, legs or whole body; may start in one area then spread to other areas or stay in one place)

Unpleasant smells

Walking or running

This is the actual phase of the seizure.

Generalized seizures occur if the abnormal electrical activity affects all or most of the brain.

This affects most of the body.

A tonic-clonic seizure is the most common type of generalized seizure.

The whole body stiffens (tonic phase) and the person loses consciousness and falls.

This is followed by a violent uncontrollable shaking (clonic phase).

Absence seizure is another type of generalized seizure.

The person may lose consciousness or awareness. This is common in children.

ICTAL PHASE

The middle of a seizure is called the ictal phase.

It’s the period of time from the first symptoms (including an aura) to the end of the seizure activity, which correlates with the electrical seizure activity in the brain.

Sometimes, the visible symptoms last longer than the seizure activity on an EEG.

That’s because some of the visible symptoms may be after-effects of a seizure or not related to seizure activity at all.

Common symptoms during a seizure include:

Awareness, sensory, emotional or thought change

Biting of tongue (from teeth clenching when muscles tighten)

Blinking of eyes, eyes may move to one side or look upward, or staring

Body parts feels or looks different

Blurry vision

Change in skin color (looks pale or flushed)

Confused, feeling spacey

Convulsion — person loses consciousness, body becomes rigid or tense, then fast jerking movements occur

Déjà vu (feeling of being there before but never have)

Difficulty breathing

Difficulty talking (may stop talking, make nonsense or garbled sounds, keep talking or speech may not make sense)

Distracted, daydreaming

Dressing or undressing

Euphoric feelings

Feeling detached

Feeling of panic, fear, impending doom — intense feeling that something bad is going to happen

Flashing lights

Formed visual hallucinations — objects or things are seen that aren’t really there

Heart racing

Inability to hear

Inability to swallow, drooling

Jamais vu (feeling that something is very familiar but it isn’t)

Lack of movement or muscle tone (unable to move, loss of tone in neck and head may drop forward)

Loss of awareness (often called “black out”)

Loss of consciousness, unconscious, or “pass out”

Losing control of urine or stool unexpectedly

Loss of muscle tone in body –person may slump or fall forward

Loss of vision or inability to see

Movements of hands, like wringing, playing with buttons or objects in hands, waving

Non-purposeful movements, called automatisms, involve the face, arms or legs, such as lip smacking or chewing movements

Numbness, tingling, or electric shock like feeling in body, arm or leg

Out of body sensations

Periods of forgetfulness or memory lapses

Pupils may dilate or appear larger than normal

Repeated purposeful movements (person may continue activity that was going on before the seizure)

Rigid or tense muscles (part of the body or whole body may feel very tight or tense and if standing, may fall “like a tree trunk”)

Sounds may be strange or different

Sweating

Tremors, twitching or jerking movements (may occur on one or both sides of face, arms, legs or whole body; may start in one area then spread to other areas or stay in one place)

Unusual smells (often bad smells like burning rubber)

Unusual tastes

Walking or running

POSTICTAL STAGE

The postictal stage occurs after the ictus or active stage of the seizure.

As the seizure ends, the postictal phase occurs. This is the recovery period after the seizure.

Some people recover immediately, while others may take minutes to hours to feel like their usual self.

The type of seizure, as well as what part of the brain the seizure impacts, affects the recovery period — how long it may last and what may occur during it.

Common symptoms after a seizure include:

Anxiety

Confusion

Depression, sadness, upset

Difficulty talking or writing

Embarrassment

Emotional behavior

Exhaustion

Fear

Feeling fuzzy, light headed or dizzy

Frustration

General weakness or weak in one part or side of the body

Headache

Lack of awareness

Memory loss

Nausea or upset stomach

Physical changes

Sensory changes

Shame

Sleepiness

Slow response or not able to respond right away

Thirst

Thought changes

Urge to go to the bathroom or lose control of bowel or bladder

They also may suffer such injuries as:

Broken bones

Bruising

Cuts

Head injuries

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Resources:
http://www.epilepsy.com/learn/epilepsy-101/what-happens-during-seizure
http://www.healthcommunities.com/epilepsy-seizures/seizure-phases.shtml
http://www.uchospitals.edu/specialties/neurosciences/epilepsy/seizure/stages.html
http://www.news-medical.net/health/Epilepsy-Seizure-Types.aspx
http://primarynurse.com/seizures/Understanding_The_Stages_Of_A_Seizure.php


113 Comments »

  1. There is also a phase known as “Postictal Psychosis.” It can come on several days after the patient seemed to have recovered from the seizure. It can last for days, or even months in some cases. See papers on this subject by Drs. Devinsky and Karceski. The situation is complicated because most patients with epilepsy cannot tolerate antipsychotic medications (which can trigger seizures).

    Like

    Comment by Martha — January 18, 2016 @ 12:22 PM

    • Martha, as always, you amaze me with your knowledge. 🙂

      Like

      Comment by Phylis Feiner Johnson — January 18, 2016 @ 3:18 PM

      • Thanks, Phyllis, but I only know about it because my son went through it between Xmas and New Year’s. It was awful! T-c seizure, seemed to have recovered, then went into this very dark place. His neurologist told us it is not uncommon to have this “psychotic” period of great irritability several days after a seizure. I did some internet surfing, and found papers by the authors I mentioned. Fortunately, it did not last too long. The “treatment” for this is to prevent seizures from happening in the first place.

        Like

        Comment by Martha — January 18, 2016 @ 4:04 PM

  2. Great posting on four phases of seizures. I can definitely relate to it and better understand what is happening to me.

    Like

    Comment by Deborah — January 18, 2016 @ 1:30 PM

  3. Thanks again Phyllis for the info. I always felt I never had an aura, but perhaps it is one I don’t recognize. I’ll put it in my log that I just use to record seizures and if I had little sleep or if stressed. now I will add feelings before a seizure.

    Like

    Comment by Mary Jane levell — January 18, 2016 @ 1:37 PM

    • Do you know what your triggers are, Mary Jane?

      Like

      Comment by Phylis Feiner Johnson — January 18, 2016 @ 3:20 PM

      • usually lack of sleep or stress, but lots of time no known triggers–at least that I can identify

        Like

        Comment by Mary Jane levell — January 18, 2016 @ 9:19 PM

  4. Phyllis,

    What are your thoughts on a service dog for Epilepsy? If one cannot identify an aura, can a dog sense a seizure coming on? My epileptologist says it doesn’t help, but I have read that it does.

    Like

    Comment by Mary Jane Levell — January 18, 2016 @ 2:42 PM

    • Yes, I believe you’re right. The dog’s sense of smell and motion are what detect a seizure coming on.

      Like

      Comment by Phylis Feiner Johnson — January 18, 2016 @ 3:16 PM

      • thanks! I thought so.

        Like

        Comment by Mary Jane levell — January 18, 2016 @ 9:20 PM

    • From what I understand, just about any dog can be trained as a seizure response dog, i.e, get help, protect the patient, etc. Some dogs (not breed specific) develop the ability to detect an imminent seizure and warn their “patient.” They can’t detect a seizure in just anyone. It takes a long time with their owner, the patient, to develop the skill. Do we have any experts who can comment? I realize this post is old.

      Like

      Comment by Bobby Yarbrough — November 30, 2016 @ 6:01 PM

  5. Really good information! Makes seizures understandable!

    Like

    Comment by Paul — January 18, 2016 @ 3:42 PM

  6. Glad it was helpful, Paul!

    Like

    Comment by Phylis Feiner Johnson — January 18, 2016 @ 4:20 PM

  7. Martha, that sounds horrid. And the treatment was worse than the condition.

    Gives you a lot of confidence, eh?

    Like

    Comment by Phylis Feiner Johnson — January 18, 2016 @ 4:23 PM

  8. Dear Phylis, I think I’m in one of those seizure modes. Home alone, taking to my bed, Jim comes back in a jiffy, but I don’t know what to tell him. Just typing this is a tedious chore, but wait! Is Juliet the sun? Is Phylis watching ? Have been moving, slowing, typing laborisly, (is that a word?) Sheesh Louise? Wait, I’m trying to unwrap a hard candy and I can’t! When I can’t unwrap candy, I’m in trouble!

    Like

    Comment by meesher@pacbell.net — January 18, 2016 @ 7:00 PM

  9. thanks for info, I try and keep up with your blogs. My youngest son(29 yes old) sometimes will go 2,3 weeks or more with no seizures then will have 3 or 4 in couple days. No seizures in November then 9 in December and they all came like I said before. One week 3 in 2 days then 8 or 10 days later several more. Our Dr is puzzled, any answers on your end?

    Like

    Comment by Buddy Dowlen — January 18, 2016 @ 11:46 PM

  10. Now, if only we could get the general public (and even most medical professionals) to realize that “falling down, shaking like a leaf, and eyes rolling upward” is only one of MANY, MANY types of seizures.

    Like

    Comment by Laura McGaffey — January 19, 2016 @ 12:19 AM

  11. I have never heard of the prodomal stage. Being someone with epilepsy anything out of normal makes me uneasy…and headaches are not normal for me. So, the prodomal stage brings up a question. Since the week before Christmas I have suffered from headaches. Fortunatrly I’ve not d any seizure activity.But I’ve been stressed with deadlines and not sleeping well.

    Like

    Comment by Tom — January 19, 2016 @ 12:25 AM

  12. To be honest, I had never heard of the prodromal stage either until I started researching this article.

    But it makes sense. Those activities and emotions that lead up to an aura, sort of make it inevitable with someone who has epilepsy.

    You might say:Triggers, for auras not seizures.

    Like

    Comment by Phylis Feiner Johnson — January 19, 2016 @ 9:21 AM

  13. It’s a very thorough article, Phylis! I have never heard of the prodromal phase, I thought that the symptoms you described belong to the auras. The mood changes, the irritability, I put as part of adolescence, though I suspected that there could be some connection with my son’s absence seizures. Thank you for the distinctions, very informative.

    Phylis, could you write something about hippocampal sclerosis, as well? When we were looking for the seizure focus – which was not found by PET scan -, a left sided HS was identified by a 3T MRI. The doctor said that it could also be the cause of seizures, or at least there is connection between them. It scares me because I was told that HS is a progressive disease.

    Like

    Comment by explosiveduckballerina — January 23, 2016 @ 12:35 AM

  14. This from The Oxford Journals Brain — a Journal of Neurology, Volume 122, Number 6 Pages 1007-1008:

    “Hippocampal sclerosis is a very common feature of temporal lobe epilepsy (complex partial seizures or limbic epilepsy).

    It is found in approximately 50–75% of temporal lobe resections made for medically intractable limbic epilepsy (Honavar and Meldrum, 1997); indeed the presence of sclerosis is a good indicator for a positive outcome to surgery.

    A very long-standing question is whether hippocampal sclerosis is the consequence of repeated seizures, or whether it plays a role in the development of the epileptic focus.

    Longitudinal MRI studies will, no doubt, soon provide an answer to the question of whether sclerosis represents part of a pathological progression of the hippocampal epileptic focus in humans.”

    A study in PubMed indicates: “The present study demonstrates a previously unrecognised link between gluten sensitivity and TLE with HS.

    This association was very robust in this well-characterised group of patients; thus gluten sensitivity should be added to the list of potential mechanisms leading to intractable epilepsy and HS.” (WOW!)

    And in the Expert Review of Neurotherapeutics, Craig Watson says, “Medial temporal lobe epilepsy due to hippocampal sclerosis is the most common epileptic syndrome and, if medically refractory, is a progressive disorder.

    Advances over the past decade allow this clinicopathological syndrome to be diagnosed in vivo.

    Many patients with hippocampal sclerosis become refractory to antiepileptic medications and are at risk of progressive hippocampal damage, cognitive deterioration and other disabling manifestations of refractory epilepsy.

    Fortunately, if hippocampal sclerosis is detected early and treated surgically, most patients with this syndrome can be rendered seizure-free, thus sparing them from further progression and disability.”

    I hope this helps rather than scares you…

    Like

    Comment by Phylis Feiner Johnson — January 23, 2016 @ 4:28 PM

  15. I’m 50 years old had my first ever grand Mal seizure back in Sept. 2015, EEG, CT Scan and MRI showed nothing, Drs thought it could have been caused by the pain pill Tramadol. On January 16, 2016, I had two back to back Grand Mal seizures. Off in the ambulance I went, EEG and CT Scan again showed nothing. I was started on Keppra, but I gotta say I am scared as anything about leaving the house being out in public. Any tips about coping would be greatly appreciated. Thanks Tracy

    Like

    Comment by Tracy — January 27, 2016 @ 8:25 PM

  16. Keppra DOES work for some. Here are some actual quotes:

    “KEPPRA HAS SAVED MY LIFE, LITERALLY! If you’re not on Keppra, I’d talk to your doc. Ever since I’ve been on Keppra, I’ve had a 96% seizure reduction rate.”
    “I took three medications for eleven years before I was finally given Keppra. I have been seizure free for three years now.”

    “I have experienced very, very few partial seizures. I have been taking Keppra since two and a half years now without skipping even one day. I have not had even one ‘confirmed’ seizure since I have been on Keppra and I cannot begin to tell you how very happy I am.”

    “Studies that I have read state that mood problems, rages, and suicidal thoughts while taking Keppra are increased if the individual has had previous diagnosis of a mood disorder (depression, bipolar, etc…), however, the side-effect is rare if there are no pre-existing mood disorders. I have had previous issues with anxiety/panic attacks (not seizure related), and I have had no mood side-effects from Keppra.”

    “Using Keppra has even helped me to get out of the deep sense of gloominess and uneasiness that I had felt when I was on Depakote all those years.”

    “Keppra has been a Godsend drug for me. Seizure meds are a lot like E itself…so different from person to person. It’s important to be aware of side-effects of the drugs so you know what to look for….but don’t let that overcome what the drug could do for you personally.”

    Give it some time…6 weeks. It takes that long to cross the blood/brain barrier.

    Meanwhile, keep a diary of your daily activities — including feelings and emotions — note seizures, timing and duration and see how you do, literally.

    Like

    Comment by Phylis Feiner Johnson — January 28, 2016 @ 10:26 AM

  17. I had seizures for years caused by guitars if I was out shopping etc I’d collapse and have the most horrible hallucinationswell thank goodness for our national health services. I am cured now that a nasty scar was located and repaired on the right side of my brain.

    Like

    Comment by Julieatgmail — March 6, 2016 @ 5:55 PM

  18. Musicogenic epilepsy is a form of reflexive epilepsy in which a seizure is triggered by music or specific frequencies.

    Sensitivity to music varies from person to person.

    Some people are sensitive to a particular tone from a voice or instrument.

    Others are sensitive to a particular musical style or rhythm.

    Still others are sensitive to a range of noises.

    Like

    Comment by Phylis Feiner Johnson — March 6, 2016 @ 9:12 PM

  19. Hi there I have epilepsy on both sides of the brain. I was diagnosed 13 years ago and went through having the WADA test and inter cranial eeg last year. As I get older I am noticing it more and more difficult to try to think and also don’t even try to get me to do two things at once.
    My postictal states are something that scare my husband and I extremely and I don’t go anywhere alone at all because of them. This includes being out of his or someone he trusts site.
    When I do have seizures they tend to cluster and Ativan is almost always required to get them to stop.

    Do you think a seizure alert dog would be a way for him to relax a little. All the stress over me can’t be good for him.
    I value your opinions. Thanks

    Like

    Comment by Lori Greenwood Hurry — May 1, 2016 @ 10:51 PM

  20. Very helpful Informative !

    Like

    Comment by maryleeparker — May 27, 2016 @ 10:22 PM

  21. Very informative and in laymans language.

    Like

    Comment by Nora Post — May 28, 2016 @ 7:44 AM

  22. Thanks, Nora and Mary Lee! (Did I spell it right?)

    Like

    Comment by Phylis Feiner Johnson — May 28, 2016 @ 8:53 AM

  23. Again, thanks for that info on hippocampal sclerosis. It was discovered 20yrs ago, 20yrs after the development of refractory epilepsy when I was 21. I’d posted in the non epilepstic seizures article that I’d found that PTSD has caused psychogenic fits. as well as real epilepsy. I found in various studies of epilepsy that severe emotional trauma as a kid can affect the physical development of the brain due to the stress ‘chemicals’ that are released during the events which can eventually cause epilepsy. Does surgery really ‘heal’ this?

    Like

    Comment by Miss Gail J Barry — June 22, 2016 @ 4:57 AM

  24. Gail, before you jump into surgery, I would suggest discussing a Vagus Nerve Stimulator with your doc.

    Here’s the skinny on what it is…

    Vagus Nerve Stimulation…Is it for YOU?

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

    Bust as you said, therapy seems to be the best addition to treatment for you.

    Here’s an article that may be of more interest:

    Childhood Abuse and Epilepsy

    https://epilepsytalk.com/2010/02/07/childhood-abuse-and-epilepsy/

    I think this may address your problem better than a surgical option.

    Like

    Comment by Phylis Feiner Johnson — June 22, 2016 @ 10:07 AM

  25. In my auras I can feel changes in sensations in the body. Such as the left hand going numb, disorientation, and body feeling. I can sometimes feel the left side of my side of my left feel odd.

    Like

    Comment by Eric — June 22, 2016 @ 11:28 AM

  26. Eric, do you know what your triggers are?

    Like

    Comment by Phylis Feiner Johnson — June 22, 2016 @ 1:04 PM

  27. This is a reply to this vagal nurve stimulater I am dr Staci Paige Williams and that I feel I have to tell you doe’s not work on everyone so you are taking a chance it won’t work sincerely, DR. Staci Paige Williams Nero surgery

    Like

    Comment by Staci Paige Williams — July 31, 2016 @ 7:53 PM

  28. Dr. Williams, thank you so very much for your input.

    Like

    Comment by Phylis Feiner Johnson — July 31, 2016 @ 9:06 PM

  29. Phylis Feiner Johnson, I get Postictal migraine headaches. Has that ever happened to you?

    Like

    Comment by Jeffrey Liakos — September 28, 2016 @ 1:24 PM

  30. Happily not. But I bet they’re pretty awful!

    Like

    Comment by Phylis Feiner Johnson — September 28, 2016 @ 2:51 PM

  31. That would be an understatement. It feels like a mallet is being applied to a person’s head.

    Like

    Comment by Jeffrey Liakos — September 28, 2016 @ 3:25 PM

  32. 😦

    Like

    Comment by Phylis Feiner Johnson — September 28, 2016 @ 3:41 PM

  33. The seizures are bad. However, I think the headaches are worse.

    Like

    Comment by Jeffrey Liakos — September 28, 2016 @ 3:58 PM

  34. I wouldn’t choose either!

    Like

    Comment by Phylis Feiner Johnson — September 29, 2016 @ 10:22 AM

  35. Neither would I.

    Like

    Comment by Jeffrey Liakos — September 29, 2016 @ 3:59 PM

  36. Good post. I had a nasty complex partial seizure yesterday morning. Today, I’m CONSTANTLY thirsty. Trying to not drink too much, but…so thirsty. Ugh.

    Like

    Comment by Tia — October 3, 2016 @ 12:18 AM

  37. Thanks for the compliment Tia.

    The thirst must be no fun. Sometimes I get to feeling like a water balloon!

    Like

    Comment by Phylis Feiner Johnson — October 3, 2016 @ 9:05 AM

  38. Phylis Feiner Johnson, I know I am not the only person on the planet with Epilepsy. However, while I am glad that nobody in my nuclear or extended family has Epilepsy, I feel isolated and lonely in some ways. As I previously mentioned, the headaches are intolerably painful.

    Liked by 1 person

    Comment by Jeffrey Liakos — October 3, 2016 @ 1:57 PM

  39. Jeffrey, do you think they may be migraines?

    Epilepsy & Migraines — Kissing Cousins

    https://epilepsytalk.com/2010/09/12/epilepsy-migraines-kissing-cousins/

    Like

    Comment by Phylis Feiner Johnson — October 3, 2016 @ 6:50 PM

  40. I am not entirely sure. However, it would not surprise me.

    Like

    Comment by Jeffrey Liakos — October 3, 2016 @ 10:31 PM

  41. Take a look at the meds that work best for migraines in the article link I sent you.

    Like

    Comment by Phylis Feiner Johnson — October 4, 2016 @ 10:12 AM

    • Phyllis: Related to other info you gave on heat and Epilepsy. I deleted it. Has there ever been study on people living in colder climates having less cases of Epilepsy? Take care. Thanks!

      Like

      Comment by mary Jane — October 4, 2016 @ 10:24 AM

  42. Not that I know of Mary Jane. But take a look at this article: Weird Epilepsy Triggers…

    https://epilepsytalk.com/2011/09/19/weird-epilepsy-triggers%e2%80%a6/

    Barometric Pressure

    Weather differences such as sudden changes in temperature, dark skies, thunder, or bright, hot sunlight and humidity may be a definite trigger for some.

    And here’s the article on heat: Heat Is Not Our Friend

    https://epilepsytalk.com/2016/06/26/heat-is-not-our-friend/

    I hope this helps.

    Like

    Comment by Phylis Feiner Johnson — October 4, 2016 @ 10:32 AM

    • Thanks again Phylis. As always you have a wealth of information which I appreciate. Before I took medication, (as I only had Absence Seizures) for five years, I told a friend, I have only missed my bus stop once in five years. I guess when I am on the bus U am relaxed. She said it is probably because the buses are so cold. I said maybe you are right. I never thought of it. Maybe cold is better

      My doctor said my seizures would get worse, and they did, as I fell down and broke my wrist, so I am now on the generic of Keppra. I hate taking medication, but I am afraid not to now. Just curious, do you take medication and if so what?

      M

      Like

      Comment by mary Jane — October 4, 2016 @ 11:12 AM

  43. Mary Jane, I take Lamictal — 200 mg at 5PM and 200 mg at bedtime. I also take Klonopin at bedtime. But it’s more for maintenance. My seizures are 99% controlled. 🙂

    Like

    Comment by Phylis Feiner Johnson — October 4, 2016 @ 3:10 PM

    • Thanks for info. My doctor. put me on Keppra 1000 mg. twice a day. I think that’s high as I am tired during the day and cannot sleep at night. He said the tiredness would go away, but I have been on it for two months and it has not gone away. What do you think? Take care!

      Like

      Comment by mary Jane — October 4, 2016 @ 7:01 PM

  44. Phylis Feiner Johnson, I take the generic version of the Lamictal.

    Like

    Comment by Jeffrey Liakos — October 4, 2016 @ 6:45 PM

  45. Has it helped? What triggers your seizure activity? Foods that you have problems with? Strobe lights? Stress in general?

    Like

    Comment by Jeffrey Liakos — October 4, 2016 @ 11:51 PM

  46. My seizures are 99% controlled and brought out by (surprise!) acute stress.

    Like

    Comment by Phylis Feiner Johnson — October 5, 2016 @ 8:55 AM

  47. Mary Jane, I think you should discuss your sleeplessness with your doc. He might add on something.

    Another thing that I heard helps people taking Keppra, is keeping their Vitamin B levels up.

    B Complex Vitamins are, without a question, the star of all vitamins. In sufficient quantities, especially those that combine B6, B12, folic acid, thiamine and biotin, are vital to the production of numerous brain chemicals.
    Like the neurotransmitters which serve as the chemical message bearers between your nervous system and brain. The most efficient way to make use of this “brain food,” is to take it in a B complex form, since this contains all the vitamins in the B group. And when combined, they work synergistically together.

    Take a single B-50 B complex tablet twice a day with food. Each dose should contain 50 micrograms of vitamin B12 and biotin, 400 micrograms of folic acid, and 50 milligrams each of all the other B vitamins.

    (If you feel stressed, you’ll probably do best with a higher intake of a B complex. A daily dosage of 100-200mg. may be required, split into doses 2 or 3 times a day. Take this extra dose for a short time until you find that you are fairly relaxed, and then cut down the amount.)

    But Mary Jane, please ask your doctor first. He may have other ideas.

    Like

    Comment by Phylis Feiner Johnson — October 5, 2016 @ 9:03 AM

  48. Phylis Feiner Johnson, stress sure does not help.

    Like

    Comment by Jeffrey Liakos — October 5, 2016 @ 12:42 PM

  49. Stress and Seizures

    https://epilepsytalk.com/2016/08/23/stress-and-seizures/

    Like

    Comment by Phylis Feiner Johnson — October 5, 2016 @ 12:47 PM

  50. I do not tolerate stress very well personally.

    Like

    Comment by Jeffrey Liakos — October 5, 2016 @ 4:25 PM

  51. Who does? 😦

    Like

    Comment by Phylis Feiner Johnson — October 5, 2016 @ 4:30 PM

  52. Nobody insofar as I know. Some people may just hide their stress better than other people.

    Like

    Comment by Jeffrey Liakos — October 5, 2016 @ 4:39 PM

  53. Info. very helpful- I have been having nocturnal seizures only … totally oblivious to them (my poor wife suffers ; she informs me of my fits). I’m 68 and they’ve only startef this year. No medication as yet (reluctant to join pill-popping society) but looks like I’m gonna have to give in. Had a very busy, very emotionally charged year however; don’t know if this might be contributing factor as there is no generally accepted known cause for its emergence. Thanks to all you contributors on this site … very helpful. Problem shared and all that.

    Like

    Comment by Rex — October 18, 2016 @ 9:59 AM

  54. As I said, the ensuing headaches hurt. Much worse than a stress-induced headache.

    Like

    Comment by Jeffrey Liakos — October 18, 2016 @ 2:41 PM

  55. It would not surprise me.

    Like

    Comment by Jeffrey Liakos — October 20, 2016 @ 3:18 PM

  56. Research shows that Depacon (Valproate) and Topamax (Topiramate) are effective in treating migraines and epilepsy.

    And each has FDA approval for treating them together.

    Depakote (Divalproex Sodium) also works for both, creating a therapeutic “two-fer.”

    There are also several other anti-epileptic drugs that have also been shown to lessen migraine headaches – such as Neurontin (Gabapentin), Keppra ( Levetiracetam) and Zonegran (Zonisamide).

    However, the dose of AEDs in the treatment of migraines is usually lower than that used for epilepsy.

    Like

    Comment by Phylis Feiner Johnson — October 20, 2016 @ 3:23 PM

  57. Migraine throughout childhood and teens then OK. Suddenly 10 years ago aged youthful 50 full nocturnal tonic-clonic. Partner freaked. Then 3 monthly episodes typically days. Clear EEGs then relented to taking Carbamazepine but naughty only taking intermittently & x4 year episodes continued. Thought I could predict with weird early onset feelings (confusion unable to read etc). Overturned the car in 2013 when I lost where I was and partner thought I was going for a drive instead of getting home (No one hurt but knocked down a wall). Surrendered licence and taking it more seriously. Tongue now badly bitten, front teeth chipped. Switch to lamotrigine but dont like effects on mood ..back to carbamazepine but regularly now. Still occasional episode x2/3 but fingers crossed. Resent this condition overshadowing my life. Diag Left temp lobe E.

    Like

    Comment by David Dickinson — October 21, 2016 @ 5:08 AM

  58. First of all, I don’t want to sound like a nag, but you should stick to your medications regularly.

    The Perils of Discontinuing Your Meds

    https://epilepsytalk.com/2014/12/14/the-perils-of-discontinuing-your-meds/

    And, if it will make you feel any better, my epilepsy is 99% controlled, yet I managed to drive into the back of my garage! (Lost my driver’s license for 8 months.)

    However, Lamictal has been very good for me. At first, it made me crazy/hyper, then I switched my dose to 5PM and bedtime and now I’m A-OK. Side effect free for 10+ years!

    Like

    Comment by Phylis Feiner Johnson — October 21, 2016 @ 2:40 PM

  59. Phyllis, your info always leaves me feeling smarter about my own self- “knowledge is power”! My partial complex seizures have been happening over 14 years. The auras, deja-vu, dreamy feelings always happen; those scare me the most. Seizures happen mostly in my sleep now, but sometimes I get prodromal & auras, unmistakable. Thanks for the info. I’ll never lose hope!

    Like

    Comment by Suzanna Price — December 13, 2016 @ 4:48 PM

  60. Awe shucks, Suzanna. Thanks for the complement.

    If you want to read more about nocturnal seizures, here’s an article:

    The Nightmare of Nocturnal Seizures

    https://epilepsytalk.com/2015/04/11/the-nightmare-of-nocturnal-seizures/

    Like

    Comment by Phylis Feiner Johnson — December 13, 2016 @ 4:55 PM

  61. I cannot take zonisimide any longer so I am slowly reducing that and still taking keppra and hoping to reduce that. These meds are not working for me. I asked the doctor to presribe lamictal for me because I read there are fewer side effects and he said aptiom would be better for me. Well I looked this drug up on “dollars for doc” and put his name in and state and when his name came up I hit it for further detail and discovered this company. pays him $89,000 a year to promote their product. I question whether it is good for me or is he just promoting it. Have you ever heard of this web cite? Also , I read lamictal is the best anti-seizure drug. What do you think? Do you have insomnia problems? Fortunately, my insurance company will not pay for aptiom as I was awake half the nite worrying. I left my doctor a message, but he has not returned call.

    Like

    Comment by Mary Jane Levell — December 14, 2016 @ 9:49 AM

    • There is not a “best seizure drug” per se. Every person is different and you just have to find a med that will give you the best control, hopefully zero seizures. Interestingly, Lamictal has been the best for me over the years. I have been on Tegretol, Keppra, and Topamax as well. I’m going to check out that website. I had never heard of it.

      Like

      Comment by Bobby Yarbrough — December 14, 2016 @ 12:38 PM

  62. First of all Mary Jane, I’ve taken Lamictal for 10+ years (400mg) and it has been very good for me.

    At first, it made me crazy/hyper, so I changed the dose to 200mg in the AM and then 200mg at 5PM.

    Since then, no side-effects, no worries.

    As for your doc, I would seek a second opinion or dump him altogether.

    Below is a compilation by website forum members who have had positive personal experiences with docs over the years.

    2016 Comprehensive List of GOOD Neurologists…Epileptologists… Neurosurgeons…and Pediatric Doctors

    https://epilepsytalk.com/2016/01/03/2016-comprehensive-list-of-good-neurologistsepileptologists-neurosurgeonsand-pediatric-doctors/

    As for the “dollars for doc” website, thanks for the heads-up. I wish everyone knew about it.

    Thanks for the info and your resourcefulness.

    Like

    Comment by Phylis Feiner Johnson — December 14, 2016 @ 10:09 AM

  63. Thanks Phylis for your input. At least there is someone I can trust and for that I am greatful. I checked out that website for good doctors and unfortunately Dr. Salem Benbadis is listed. He is a good Dr..but I looked him up on dollars for docs and he was on the take for $350,000
    in 2014. Probably more in 2015m. Disgusting!

    Like

    Comment by Mary Jane Levell — December 14, 2016 @ 1:34 PM

  64. OMG! What state is he in, so I can knock him off?

    Also, what is the link to this marvelous website. I think it’s worth a mention.

    Like

    Comment by Phylis Feiner Johnson — December 14, 2016 @ 1:38 PM

  65. Found him, Mary Jane. (Thank goodness he was early in the alphabet!)

    He’s erased.

    Again. THANK YOU for your input.

    Like

    Comment by Phylis Feiner Johnson — December 14, 2016 @ 1:43 PM

    • My doctor Erasmo Passaro is on the list. He is. a good doctor but as I told you on the take for $200,000 plus. I feel this is completely unethical. He is the Director of the Epilepsy Clinic in St.Petersburg and Dr. Benbadis, who is also on that great doctor list and Director of the Epilepsy clinic in Tampa and on the take for $350,000 plus. My sistersaid they are all on the take and if he is a good doctor stick with him. I have a problem with that. If a drug is good,why pay a doctor off to promote it. There are drug companies that don’t have to do this.

      Like

      Comment by Mary Jane Levell — December 14, 2016 @ 6:04 PM

  66. OK. So the dilemma becomes to eliminate a doc from the list or to keep them.

    I erased Dr. Benbadis from the list, but are you saying that if I erased every doctor “on the take” that would leave nobody left????

    Like

    Comment by Phylis Feiner Johnson — December 14, 2016 @ 6:30 PM

    • The only way to find out is to look each one up you have an interest in. I found one, but my insurance doesn’t take him. I will keep on looking and pray something positive happens.

      Like

      Comment by Mary Jane Levell — December 14, 2016 @ 7:17 PM

  67. That’s kind of depressing…

    Like

    Comment by Phylis Feiner Johnson — December 14, 2016 @ 8:07 PM

  68. Hi, could someone tell me how to explore what is happening to my husband, who has had 3 seizures so far (the latest one on Thursday) and his postical period (?) is extremely prolonged… He had the seizure on Thursday at noon and since then he was absolutely disorientated until this morning (it is Saturday today). I visited him in the a&e, but he did not recognise me, sometimes he opened his eyes (when he sensed something loud or when someone talked to him), but his eyes were completely blank, he could not answer any questions, he was very agitated and he was absolutely somewhere else. This has happened the 3rd time, all of his seizures are the same, he always ends in a hospital between life and death. What is this??? Can this be status epilepticus? Or does that mean that someone has several clonic-tonic seizures in a row? Please help us, I am so worried and the doctors are clueless what might cause this… Thanks!

    Like

    Comment by tenger — December 17, 2016 @ 4:29 PM

    • I’d be interested to know how he has been treated during the emergency (paramedics or A&E). They may have treated him with IV medication that can take a while to leave the body. I would think the doctors or nurses would have explained this though.

      When was the very first occurrence? Was he started on oral medication? If so, when? And has anything improved at all? Sometimes it takes some work to find the right medication or combination of medication and the right dose(s).

      I’d ask for a carotid doppler as well, if it hasn’t been done yet, to check blood flow to the brain even if a CT with contrast has already been done. I think the infection is probably unrelated because 39C is not that high. Good luck. Hopefully you’ll have good news to share soon.

      Like

      Comment by Bobby Yarbrough — December 19, 2016 @ 1:22 PM

      • Thanks Bobby! Yes, the nurses told me that the oxygen & the IV might cause his disorientation, but I asked a neurologist there if it is possible that he is under seizure when he is not aware of himself and the neurologist answered honestly that he does not know… So he could not tell me if these awful 2 days were part of the ictal or the postical period… 😦 I do not know why they did not do an EEG then, but I am not sure if it would have given us answers either, as I am not medically trained…

        His very first seizure was in March, 2014 and he has been taking Keppra since then. In spite of this he had his 2nd one in March 2015 and he had this 3rd one last week. 😦

        Today they performed an MRI with contrast, we will have the results tomorrow…

        Like

        Comment by Tenger — December 19, 2016 @ 4:34 PM

      • Have they increased his dose of Keppra since the two recent seizures (or added another if he’s at max dose of Keppra)? In my experience, that’s that the typical response. Test #1 for seizures, after you’re our of the ER (either admitted or discharged) is an EEG. It would be really odd for him not to have had one. Thinks of it like a patient with chest pain not getting an EKG. The EEG can help the doctor to identify the origin of the seizure, among other things. I hope you get some answers soon.

        Like

        Comment by Bobby Yarbrough — December 20, 2016 @ 3:58 PM

      • No they have not increased his original dose (2 tablets per day) since the 1st seizure…
        They did EEGs after each seizure, but they were all normal just as his MRI scans.
        Interestingly, this time the doctors told us something like he is not epileptic “in the word’s everyday sense”, but he is prone to have seizures if he has high fever + respiratory disease. :-/
        Thanks a lot for your help and I wish you a very happy Christmas and a great new year!

        Like

        Comment by Tenger — December 26, 2016 @ 5:59 PM

  69. Honestly, I don’t know either.

    It’s too long for the postictal period, but it could be status epilepticus.

    “Status epilepticus (SE) is a common, life-threatening neurologic disorder that is essentially an acute, prolonged epileptic crisis. SE can represent an exacerbation of a preexisting seizure disorder, the initial manifestation of a seizure disorder, or an insult other than a seizure disorder.”

    http://emedicine.medscape.com/article/1164462-overview?pa=2lD0Qp2%2F4E40Wjncanql%2FiA2GjC2i7M74pasE8o7%2BVxwlD6I5q277fdQmb1JsjnukZQdfX1MfR0ppmICWs8TecOTxXj1FB9%2Fm4TgsfVXs6o%3D

    What kind of diagnostic testing has he had?

    Beyond EEGs…Diagnostic Tools for Epilepsy

    https://epilepsytalk.com/2016/10/19/beyond-eegsdiagnostic-tools-for-epilepsy/

    I hope this is resolved soon Tenger, for both of your sakes.

    Like

    Comment by Phylis Feiner Johnson — December 17, 2016 @ 5:36 PM

    • Thanks a million for your quick reply! It is so worrying, because this was the third time we experienced the same pattern: He starts to cough, then he develops very high fever (39+) and 1-2 days later he loses his speech and he cannot write. Within a few hours he has a grand mal seizure and although he stops shaking after a few minutes, he does not “come round”, he is just lying or sitting, half awake – half asleep and he is not responsive at all. In the first two occassions he was put into induced coma, because he was so agitated that the doctors thought he might be dangerous, but this time he was not that “aggressive”, so they just let him as he was. It took him nearly two days to be his “old self”, today he was like before the seizure, he could talk, he remembered everything (apart from the past 2 days), but we are so concerned what if next time he will not come round?! His EEG , CT, MRI are said to be normal… He has a chest infection, just like at the previous two occassions, but nothing else. All of his results are normal, so the doctors do not have any idea why this is happening and we could prevent it. He is just 36, he had his 1st seizure when he was 34. 😦

      Like

      Comment by Tenger — December 17, 2016 @ 6:28 PM

  70. I think maybe, at this point, he should have a cardio work-up, to rule out (or explore) heart attack and stroke incidents.

    Perhaps between the neuro and cardio together, they can figure this out.

    Like

    Comment by Phylis Feiner Johnson — December 18, 2016 @ 10:03 AM

  71. Ahhh, yes, after ICU he was in CCU, ECG and some other tests were performed, but still everything is clear. 🙂 So this a big fat mystery. 😦 😦 Thank you again for your replies, your page is an amazing source of info!

    Like

    Comment by Tenger — December 18, 2016 @ 4:43 PM

  72. Tenger, I wish I could help more. 😦

    Like

    Comment by Phylis Feiner Johnson — December 19, 2016 @ 9:19 AM

  73. Thanks a lot, you do help a lot. 🙂

    Like

    Comment by Tenger — December 19, 2016 @ 12:02 PM

  74. Tenger, please keep us posted!

    Like

    Comment by Phylis Feiner Johnson — December 19, 2016 @ 5:18 PM

    • Sure, thank you!

      Like

      Comment by Tenger — December 19, 2016 @ 6:26 PM

  75. There no fllow ottom or link. My enil is:
    alicelee.lawlessgmail.com
    Thamk you.alice

    Like

    Comment by Alice — January 6, 2017 @ 9:04 PM

  76. Alice, try the link again, I was having technical difficulties yesterday.

    Sorry for the inconvenience.

    Like

    Comment by Phylis Feiner Johnson — January 7, 2017 @ 9:45 AM

  77. all the different seizures I had all my life, anxiety,confusion, depression, diffulty talking, embrassmsnt, emotional behaveior,exhastion,fear,feeling fuzzy or dizzy, frustration, general weakness, from shoulders down both sides front and back of whole body.headache, lack of awareness,memory loss, nerves. shame, speelines, slow respones or not at all, thirst, thouhgt changes, bruising, cuts. most of these I still have.

    Like

    Comment by michele metzger — January 11, 2017 @ 12:24 PM

  78. It seems like you were very hard hit, Michele.

    Like

    Comment by Phylis Feiner Johnson — January 12, 2017 @ 9:51 AM

  79. My wife was going with this suffering for last one year till we finally settled with epilepsy diagnosis,
    Today she is on Etizolam twice a day, weekly shots of Vit 12 and vit D 60k,
    Headache is manageable, but heaviness remains,
    She has recovered almost 90% but still consistency needs to be validated, once headache is cured, we will have better relief,
    Pls advise further,

    Like

    Comment by skjharsh — February 12, 2017 @ 6:27 AM

  80. Are they migraines? Because research shows that Depacon (Valproate) and Topamax (Topiramate) are effective in treating migraines and epilepsy.

    And each has FDA approval for treating them together. Depakote (Divalproex Sodium) also works for both, creating a therapeutic “two-fer.”

    There are also several other anti-epileptic drugs that have also been shown to lessen migraine headaches – such as Neurontin (Gabapentin), Keppra ( Levetiracetam) and Zonegran (Zonisamide). However, the dose of AEDs in the treatment of migraines is usually lower than that used for epilepsy.

    Like

    Comment by Phylis Feiner Johnson — February 12, 2017 @ 12:41 PM

  81. Good

    Like

    Comment by Dr — March 2, 2017 @ 9:29 PM

  82. Thanks.

    Like

    Comment by Phylis Feiner Johnson — March 2, 2017 @ 10:51 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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