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Alteration in mood following a seizure
Mon, 10/04/2010 - 08:34I had my second seizure a few days ago...my 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)...it'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 feel....like 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
Re: Alteration in mood following a seizure
Submitted by Ann Law on Sun, 2011-01-09 - 12:01
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.
Ann
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.
Ann