Community Forum

Alteration in mood following a seizure

I had my second seizure a few days own darn fault because I ran out of dilantin and my usual pharmacy told me they could no longer fill it and that I now had to either get it via some sort of mail plan or to go in person to the hospital to get it (hospital health insurance changed their rules).

The first seizure...over a year ago...I was totally distracted afterwards by the fractured shoulder that had I had incurred as a result of it. However this time, uninjured, I encountered some odd moods and feelings and I am interested to know if this is normal. The only way to describe it is...eerie, creepy. I feel like I'm walking around in an altered reality...if that makes any sense. My memory was also affected significantly....though this does seem to be improving with time. I am 58 so starting to get that normal forgetfulness of aging anyway....but this is/was much worse. It was scary, truly.

Since the second seizure (occurred about a week ago)'s been extremely eerie and weird. I feel apprehensive....and almost scared. Of what, I have no idea. It's just this general feeling of trepidation, anxiousness, fear.

If anyone read Superman as a child, there was an alternate universe, Bizarro world...where everything was weird and backwards. And this is how I I'm in some alternate and backwards version of my usual reality. Is this normal? Will it continue to gradually get better with time? What in the heck causes this to happen after a seizure?

Thanks so much


Medication drop can do it.  I know for fact.  Change of medication can do it too.  That is strange that the pharmacy could not give you a tide over until you were able to find a place to give you meds. 

Your seizure activity is because of the drop of medication. 

Take it easy on yourself.  Make sure you speak to someone about the problem of no medication Do not drop you will go into status!

That is why your mood is changing.....

I hope I am replying correctly. This message board has a format I'm not really accustomed to. I appreciate all the replies. Regarding the was indeed my fault that I ran out. It's a rather long and involved story but I'm still married (for almost 30 years) to a very abusive alcoholic....have been separated from him for 5 years but stay married to him because it enables me to have health insurance (through his employment). But he and I don't speak...neither do he and our sons (his choice) normally, I would have had this  handled via his health insurance (with his input/help) and the pharmacy did not run out of was just that the health insurance changed their policy and I could no longer get regular meds via the pharmacy....only prn (as needed) or short-term use/1 time use meds. I realize I was a complete fool because generic dilantin problably is very inexpensive, I would imagine.....and I should have used my head and just paid for it out of pocket rather than through insurance. I take care of my elderly father and also drive him everywhere and I was just procrastinating going to the hospital...where was now able to get scripts filled through my insurance.....waiting for a day that I didn't have to take dad anywhere. I could literally strangle myself over this....seriously. I can't believe what a fool I was.

Ever since the seizure, I am having all sorts of short term memory problems....mainly of the type where something is in your hand one minute and a second later it's lost and you have no idea where you put it. At the age of 58, I tended to do this occasinally anyway.....but since the seizure a week ago it's really pretty severe. I am losing things every other minute...seriously.  In fact, my son is really very concerned about it. Is this typical following a seizure? I'm assuming it was a grand mal because I was literally unconscious all the way to the ER and remember nothing except driving down a particular road, on my way to pick my dad up from a medical appt. (he's kind of a hypochondriac to boot, which makes it additionally difficult to do things for me/myself. Also.....I have this eerie feeling (ever since the seizure) that I'm in a place that is simultanously familiar and alien. The best way to describe it is....I had a friend who went to India and saw children begging on the street, etc....and when she returned she looked like I've been feeling.....stunned and weirded-out. Is this normal and will this resolve?

I'm just rather concerned because of the short-term memory loss (constantly losing items, mainly) and also the bizarre and alien feeling in my same life now. I'm hoping it's just post-seizure symptoms and will resolve with time.

I had a serious closed-head injury as a kid when I dived into a pool with "no hands" the 3 feet section. I almost drowned because I could not get up from the bottom of the pool for a period of time. My first seizure was over 2 years ago and the one a week ago was my second. All the scans, EEG's, etc. they did were normal. I will NEVER run out of dilantin again....words cannot tell you how much I regret it.



About head injuries and seizures, this comes from brain "Unfortunately, seizures may develop immediately after an injury to the brain or may develop in delayed fashion, showing up months or years after the initial trauma. Generally speaking, the risk of post traumatic seizures is related to the severity of the injury- the greater the injury, the higher the risk of developing seizures. Even mild to moderate injuries can result in seizures.

There are many kinds of seizures and seizures are not an uncommon condition among persons without head injuries. It is thought that a head injury disrupts the pathways of the brain and that an epileptic seizure can be viewed as a sort of short circuit of the brain's electrical functioning. During the seizure the electrical fields in the brain are overloaded, resulting in seizures.

The most commonly seen seizures related to traumatic brain injury are "generalized" seizures, which are also called "Tonic-Clonic" or "Grand Mal" seizures. The classification of different types of seizures is beyond the scope of this website.

Persons who have had head trauma are twelve times as likely as the general population to suffer seizures. Patients with acute intra cranial hematomas also have a high rate of epilepsy. While there are contradictory studies, the more recent study showed that of 4,232 persons suffering mild closed head injury, 53% had early post-traumatic epilepsy. Approximately 57% of head injured individuals developed epilepsy within one-year of injury. Longer onset epilepsy beginning more than four years after the trauma occurs in 20% of patients who developed epilepsy. It is estimated that 30% of all individuals suffering head trauma developed post-traumatic seizures and 80% of the time they occur within the first 24-months..."

Then about testing...Have you had:

Video EEG Monitoring – Seeing EEG and video data at the same time, permits precise correlation between seizure activity in the brain and the patient’s behavior during seizures. Video-EEG can be vital in the diagnosis of epilepsy and epileptic seizures. It allows the doctor to determine: whether events with unusual features are epileptic seizures…the type of epileptic seizure, and…the region of the brain from which the seizures arise.

Continuous Video EEG Monitoring – studies the brain waves over time. This can be accomplished through continuous Video EEG Monitoring, where a patient stays in a special unit for at least 24 hours. Antiepileptic medication is stopped for the duration of this test, since the objective is for seizures to occur so the abnormal brain waves they produce can be recorded.

A video camera connected to the EEG provides constant monitoring, enabling the medical team to pinpoint the area where a seizure occurs and track the patient’s physiological response to the seizure. Continuous monitoring can also help distinguish between epilepsy and other conditions. It can characterize the seizure type for more precise medication adjustments and locate the originating area of seizures within the brain.

My guess is that you've already had a CAT Scan (Computerized Axial Tomography) or CT (Computed Tomography)Provides detailed information about the structure of the brain by using a series of X-ray beams passing through the head to create cross-sectional images of the brain. The CAT scan helps to point to where a person’s seizures originate.

And you've probably gone through this one too... MRI offers doctors the best chance of finding the source of seizures. The images produced from the MRI are extremely precise. So,the information provided by the MRI is valuable in the diagnosis and treatment of individuals with epilepsy.

Functional MRI  takes images in “real-time” sequence and faster than the traditional MRI. By providing information about active brain tissue function and blood delivery, it is more precise and is often used to create a map of the brain and indicate where language, motor and sensory areas are located. During the scan, the patient is asked to perform certain tasks, such as tapping fingers or repeating a list of words. From the image, the neurological team can locate the exact seizure area of the brain.

MEG (Magnetoencephalography) – this technique has been available for several decades, but it is only recently that scanners involving the whole head have been available. MEG is most often used to find the precise point in the brain where the seizures start by detecting the magnetic signals generated by neurons. With these signals, doctors can monitor brain activity at different points in the brain over time, revealing different brain functions. While MEG is similar in concept to EEG, it does not require electrodes and it can detect signals from deeper in the brain than an EEG.

And as for Dilantin, here's laundry list of side effects: Unusual eye movements, loss of coordination, slurred speech, loss of balance or coordination, confusion, hallucinations can occur.

Along with mood or behavior changes, depression, anxiety, agitation, hostility, restlessness, hyperactivity (mentally or physically), unusual behavior or thoughts about suicide or hurting yourself.

Other possibilities are: tremor (uncontrolled shaking), restless muscle movements in your eyes, tongue, jaw, or neck, double or blurred vision, tingling of the hands/feet, facial changes (e.g., swollen lips, butterfly-shaped rash around the nose/cheeks).

More side effects include bone or joint pain, swollen glands, easy bruising or bleeding, swollen or tender gums. Also headaches, sore throat, fever, nausea, vomiting, constipation, dizziness, drowsiness, unusual tiredness, and conversely, insomnia are included. 

And if you’re real thirsty or constipated, don’t be surprised.  Unfortunately, that seems to be the price of all AEDs.

Try Xylitol, a natural sugar substitute that helps with the dry mouth that many of us suffer.  And Salba, a natural fiber that’s a rich source of Omega-3 fatty acids and also a natural laxative.  (Believe me, it works!)

I hope some of this helps!    Phylis Feiner Johnson


Tonialpha is quite right.  Suddenly stopping an anti-seizure med does serious stuff to your head.

I don't know why you can't get an over-ride from your pharmacist and I certainly fail to believe they "ran out of it."  Dilantin is one of the oldest and most common AEDs around.

One thing you can do is to get your doc to write a bigger prescription, so you won't run out.  Or maybe do a 90-day script.

Another option -- (for the future) is to change pharmacies.

Also, you could call Pfizer's Connection to Care (1-800-707-8990) to see about getting your Dilantin.

As far as mail order is concerned, you can try Pharmahelper – a comparison search engine for prescription medicine and detailed drug knowledge.  It helps you save money and buy prescription drugs safely online.  You can also research drugs, compare pharmacy prices, even find drug savings based upon your particular condition.

I hope this helps...     Phylis Feiner Johnson

I know this does not answer the questions you have but if I were you I would file a complaint with the pharmacy or someone.  I don't think it is your fault you ran out of meds.  Running out of medication and letting a person's health be adversely affected is unacceptable.  If you don't feel comfortable doing it, then let a friend help.  That could have caused you serious, serious problems.

I know this does not answer the questions you have but if I were you I would file a complaint with the pharmacy or someone.  I don't think it is your fault you ran out of meds.  Running out of medication and letting a person's health be adversely affected is unacceptable.  If you don't feel comfortable doing it, then let a friend help.  That could have caused you serious, serious problems.  I mean think about it, what if you were trying to be seizure free to regain a driver's license, or to return to work, and your pharmacy did this?

Hi, Deena:

I read your post and also all the answers and I felt sad that no one really addressed your concerns and fears.

First, you are NOT alone: I too have experienced that "eery" feeling, almost as if everything familiar looks just a little off? And that apprehensive feeling at the pit of your stomach, not fear, but more like you're expecting something to happen, but can't remember what? Or like you've missed something, but what? These feelings, you should have been told, are common in epilepsy sufferers who have simple partial and complex partial seizures.

I have also experienced that sudden "time loss" where I am holding a pen, then suddenly it is gone. I describe this as feeling like some one stole a frame from a comic strip: My body kept going, doing what it was doing, but I wasn't there. The strangest time this happened, I was on the bus going to an EEG. I was talking to the bus driver. Suddenly, he was asking me a personal question about my illness. I felt defensive, "How did you know that?" "You just told me," he said. This took place in less than a minute, the time it took to cross an intersection! But it has happened to me many times, and usually other people are the ones who tell me about it.

Like you, my illness developed after a brain injury. Epilepsy after Traumatic Brain Injury is quite common, and it is very common for it to take years to crop up. Really! This is what happened to me, and some days I still feel like someone is "rearranging furniture" in my head. Also, so-called "subclinical" seizures are very common in TBI survivors, even in folks with mild concussions. If docs aren't really skilled at reading an EEG they'll miss it, and some experts feel that EEG in post-TBI seizures may not be completely diagnostic. The really good docs all agree one must treat the patient, not the EEG.

It is true that sudden drops in your AED can cause some of what you are experiencing. It happens to me when I miss a dose. Drops in your AED actually lower your seizure threshold abruptly. For all you know, you may be having simple partial seizures (or "aura"), which are aften thought of as "warnings". SPS can cause strong emotional reactions and the kinds of perceptual changes you describe. So can the pre- and post-seizure phases of a complex partial seizure (CPS). Post-seizure confusion is very common. As I live alone, sometimes it is the only way I know I've had an event.

Even if your previous EEG left you with a Dx of PNES, you may still be having SPS and CPS merely as a result of having had a drop in your Dilantin level. Also, your doctors should explain to you that PNES and Epilepsy often go hand in hand; 40% of Dx'd epileptics have non-epileptic seizures.

But what you are describing sounds like what I have gone through; in CPS, you lose some consciousness, but often carry on doing what you were doing; unless someone actually witnesses this, you'd never know, except for the missing scissors (at least, this is how my neuro described it to me.) With CPS, your doc may decide Dilantin is no longer the AED of choice for you. So you need to go back to your doc, with your witnesses, and describe what is happening to you.

Do not allow your doc to dismiss your fears as stress due to your difficult "psycho-social" situation. Epilepsy and PNES and PTSD diagnosis aren't exact sciences; and TBI mimics them ALL! It takes an artful doc to tease each out from the other. But if you are responsible for the care of others, you MUST be taken seriously, as your symptoms can impact others; a doc who is looking for PNES may push an anti-depressant on you, rather than remembering that 1) after 2 grand mal seizures, you are statistically more likely to develop recurring seizures and 2) it is commonplace for AEDs to lose effectiveness over time; in fact, most AEDs begin to lose some efficacy after six months, so you were doing very well on Dilantin if you lasted two years, but it may be time for "adjunct" treatment. 

Something that has worked for me, as an "adjunct" is actually an Alzheimer's med, Namenda, that helps damp down the excitatory neurotransmiter glutamate in the brain. The use in seizure is "off-label" but it is getting serious study as a possible med for TBI and PTSD. Officially, I take it for TBI-related confusion and depression. For me, it was like someone finally turned on the lights. I had to have a psychiatrist prescribe it, but there is good support for this use documented in the literature and it is being studied in certain types of epilepsy.

If your doc won't take you seriously, or tries to chalk it up to "senior moments", find another doc, or at the very least, get a second opinion. Remember, too, that the hormonal changes of menopause and post-menopause can also complicate your brain function and your seizure profile. Discuss this with your doc. Make sure your thyroid is doing its job, too; thyroid problems can worsen seizure disorders. So can certain breast cancers (not to scare you, just to say: TAKE CARE OF YOU!) and other auto-immune disorders.

Lastly, Deena: Except for getting lax with your AED, which we all have done when we've been seizure-free for a while, you have done NOTHING WRONG. STOP BLAMING YOURSELF. And don't accept the "spanking" you got from the community here. Formulate a plan of action, enlist the help of supportive friends and family, and take it one step at a time.

As for those weird feelings: If I am hearing you correctly, it sounds as if you, like many seizure sufferers are having a "perfect storm". You had an unexpected seizure, with new symptoms that no one educated you about, and you are terrified it will happen again. When this happened to me, I was afraid I was losing my mind! You're NOT. If you are experiencing what I did, your "wierd" feelings will subside, slowly, as your brain regains its equilibrium.

SO: Be patient. Log your symptoms. Keep yourself safe. Don't let the forum bully you, or diagnose you.  If you can, find a TBI support group either in your area or online. A good one can be a great source of information about savvy docs, as well as which docs to avoid. Sometimes, I have learned, a sympathetic internist can be better at this than an epileptologist: The BEST doctor is the doctor that listens to YOU.

As for our other commentators: I think we let Deena down here. She was clearly very alarmed about what she was experiencing, and I think we could have done a better job of supporting her with our personal experiences, instead of giving her laundry lists of things to do. In my case, I suppose I tried to do both. But we mustn't forget that this can be very scary, and hearing that other people have gone through it can be the most reassuring thing in the world.


I very recently had a big ole tonic-clonic pee-your-pants seizure for the very first time. I was hospitalized for 3 days and I think I slept for 2 of them after being given the meds ativan and keppra in the ER. I am home now, and I know exactly what you are saying--I have seriously wondered if I am going nuts! I am a 44-year old female, basically healthy, not overweight, I exercise regularly--oh, and I also am the mother of two small children--ages 4 and 7--another incentive to be healthy! Currently, I am not taking any meds, and have been fine other than the recovery from my cracked ribs and bruised head--no more seizure stuff. I do notice that my sense of smell is hyper-sensitive and I have that nagging deja vu' feeling as well. I guess "bizarro world" sort of sums it up nicely! LOL!
All my tests in the hospital came back negative for epilepsy/seizure disorder/lesion of the brain--my eeg, mri, and ct--all normal. (whatever that means...heehee) Also--I have been a registered nurse for over 20 years and my husband is a physician, so I have a little insight into things. My follow-up with a neuro group is coming up soon--I guess we'll see how that goes.

Our Mission

The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

24/7 helpline