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Looking for some insight on hallucinations and seizures
Thu, 03/22/2012 - 22:47Topic: Living With Epilepsy - Youth
I am hoping someone can provide me with some insight on seizures and
hallucinations. My daughter who is 13 has complex partials, absense, and
tonic clonic seizures. Last week I received a call from her school
stating that my daughter had seen a "person" in all black, no face or
anything like that. I was told by the school I had to immediately take
her to the ER as this was NOT normal. I took her to the ER, and gave
them all of her medical history, medications, etc. The Dr's, nurses and a
crisis worker all spoke with myself and also with my daughter. I stated
numerous times that I believe this was seizure related. They
recommended I sign a consent to send her to a "facility" for a mental
evaluation, as they had never heard of a seizure causing a
hallucination. I again stated that she has never hallucinated, and she
was completely calm and of sound mind when I arrived at her school, the
entire episode lasted all of a minute and a half (her teacher timed it
in case it was a seizure) I told them I would not send her to a
"facility" how ever I would follow up with a Psychiatrist if her Neuro
agreed with their opinion. They were fine with that and discharged my
daughter. She has been completely fine since, as she was prior. So we
had followed up with her Neuro, and she said she was stumped as it is
not common that an epileptic would hallucinate and remember the details
of the "person" such as there was no face just all black clothing. She
has set up testing for my daughter, another eeg, another MRI and also
wants my daughter to see a psychiatrist just to rule out mental illness.
I truly believe with all of my being that this was indeed seizure
related. I feel as if my input, and also my daughters input is totally
being over looked. My daughter does not want to talk to anyone else
about this again, she has said she is TIRED of the Dr's looking at her
with the wide eyes and making her feel as if she is crazy. This as a
mother is very tough to hear a child say. I am trying to assure her that
she is not insane or crazy. Has anything like this ever happened to
anyone? I would appreciate any information any one has..
Comments
Re: Looking for some insight on hallucinations and seizures
Submitted by wd123 on Tue, 2012-04-03 - 11:15
I get these before seizures. I have heard many say the same thing. They are odd, I have seen and heard things. If it is unusual for your daughter, it is good that you got it checked out.
I too have been sick of feeling like Drs dont listen and think it is constantly something else while trying to diagnose with epilepsy. Its this mental illness or that label. I have gone to many Drs and neurologists and sick of not getting answers. Your daughter is young child going through this and my heart goes out to her in this circumstance.
Re: Looking for some insight on hallucinations and seizures
Submitted by victoria.w on Sat, 2012-03-31 - 21:21
Hi,
How strange - I have had epilepsy since a teenager and regularly had the same hallucination for many many years as part of my complex partial seizures - figure in black - no face! I've never come across someone with the same hallucination so it was quite strange reading your post. I was also very scared - thought I was going crazy and didn't talk about my experiences for quite some time.
Hallucinations do happen as part of seizures; and the sense of another presence is a known phenomena during seizures. The latest theory is the sense of another presence may result from insula involvement during seizures. There is more awareness when this part of the brain is involved. Unfortunately not all neurologists are up to date with the latest theories/research.
It may help to do some research so you feel more confident and if possible find a doctor with more knowledge in this area. Tell your daughter try not to worry too much. She's not crazy and she is not alone. Also with all the medical advances hopefully soon, there'll be a way to better control her epilepsy and for her to make good progress through life. I've had epilepsy for decades, have a degree, postgraduate qualification, two children and a full time demanding job. Give your daughter my best wishes and tell her I am thinking of her. It is hard when you rely on medical professionals but they don't have the knowledge they should have about the condition. A good psychiatrist should be able to assess your daughter correctly and confirm the hallucinations are linked to the epilepsy. If not, find another and possibly a better informed neurologist too.
Best wishes,
Victoria
Re: Looking for some insight on hallucinations and seizures
Submitted by dancersmom on Fri, 2012-03-30 - 21:01
I agree with you that your D's hallucination is seizure related. When my 26 year old D was in H.S. she began having frequent auditory hallucinations and the occasional visual hallucination. At the time, she had not been diagnosed with epilepsy. Just before her 15th birthday she had a bout with major depression. She was severely sleep deprived. One Saturday, I got a call from one of her friends telling me that D had confessed suicidal ideation. I had already made an appointment with a therapist for D, but the appointment was a couple of weeks away. I contacted the therapist and told her we needed to get D in immediately. When D arrived home that afternoon, I talked with her about what her friend had told me. D got angry and tearfully told me that she was experiencing terrible hallucinations. She said that there were thousands of evil entities who said horrible things to her. She said further that there were only six friendly entities and that she had seen one of them get murdered in gruesome, bloody fashion by the thousands of evil entities! You can probably imagine how shocked I was. Up until D's depression cropped up about three weeks before this conversation, she had always seemed perfectly healthy. She was a straight A student and a talented singer, dancer, and actress. I was reeling as D told me about her hallucinations. I was thinking schizophrenia, psychosis, bipolar disorder.......... I called my late father, who was a psychologist. He told me it sounded like D was having waking dreams due to her sleep deprivation and that what I was describing was consistent with depression in teens.
D was in therapy for the next 18 months. We got her sleep issues under control very quickly and her depression also seemed to abate pretty rapidly. However, all through H.S. I had the sense that something was still wrong. D's therapist warned us that since she was so young when she experienced her first bout with major depression she was very likely to experience future episodes. Naturally, that warning was always on my mind. I found out when D's therapist released her from treatment that D had spent several months trying to convince her that she was still having hallucinations. D never spoke to me or my husband about hearing voices after the day I told her about her friend telling me about her suicidal thoughts. The therapist believed that it was my D's theatrical personality and naivete that led her to seek a label of some serious mental illness. D did not feel like she fit in with the "normal" kids at her school. She thought that being labelled as mentally ill would validate her feelings of being different. I agreed with the therapist that she was probably right. I lived to regret it.
When D was 17, I saw her experience a full blown grand mal seizure. She had an MRI and a sleep-deprived EEG. The doctors gave her a clean bill of health! We were told that she did not have epilepsy. They surmised that her seizure was brought on by a crash in her blood sugar level. (D and I both have hypoglycemia.) We all breathed a sigh of relief.
Fast forward to D's freshman year of college. D went to school 800 miles from home. When she returned to school after spring break that year, her boyfriend broke up with her. That sent her into a 2nd bout with major depression. She was very fortunate to be treated by a talented psychiatrist. The doctor took a detailed medical history and was able to piece together all of the clues. She informed D that she had temporal lobe epilepsy and that the hallucinations she had been experiencing for YEARS were actually seizures. The diagnosis was later confirmed by a neurologist in our home town who did an MRI and a sleep-deprived EEG. Both tests came up abnormal. I have wondered for the past seven years how the doctors missed it the first time she had the tests run in 2003. D's psychiatrist put her on lamotrigine and the hallucinations disappeared! D has been treated by the neurologist who confirmed the psychiatrtist's diagnosis for the past six years. She is seizure free and mentally healthy. I just wish that we could have a re-do of her teenage years. There was a lot of mental pain and anguish for D, my husband, and myself during those years. D did not tell us about her ongoing hallucinations because she did not want us to be hurt by the knowledge that we had a D who was slowly losing her mind. Thinking about what D went through still makes me feel incredibly sad.
I hope that you will share my story with your D and with her doctor. She is not the only kid whose epilepsy has caused her to have hallucinations. While it is not common, neither is it rare! You sound like a very wise mother who refuses to accept a pat answer. I encourage you to continue to stand your ground and fight for your D.
I agree with you that your D's hallucination is seizure related. When my 26 year old D was in H.S. she began having frequent auditory hallucinations and the occasional visual hallucination. At the time, she had not been diagnosed with epilepsy. Just before her 15th birthday she had a bout with major depression. She was severely sleep deprived. One Saturday, I got a call from one of her friends telling me that D had confessed suicidal ideation. I had already made an appointment with a therapist for D, but the appointment was a couple of weeks away. I contacted the therapist and told her we needed to get D in immediately. When D arrived home that afternoon, I talked with her about what her friend had told me. D got angry and tearfully told me that she was experiencing terrible hallucinations. She said that there were thousands of evil entities who said horrible things to her. She said further that there were only six friendly entities and that she had seen one of them get murdered in gruesome, bloody fashion by the thousands of evil entities! You can probably imagine how shocked I was. Up until D's depression cropped up about three weeks before this conversation, she had always seemed perfectly healthy. She was a straight A student and a talented singer, dancer, and actress. I was reeling as D told me about her hallucinations. I was thinking schizophrenia, psychosis, bipolar disorder.......... I called my late father, who was a psychologist. He told me it sounded like D was having waking dreams due to her sleep deprivation and that what I was describing was consistent with depression in teens.
D was in therapy for the next 18 months. We got her sleep issues under control very quickly and her depression also seemed to abate pretty rapidly. However, all through H.S. I had the sense that something was still wrong. D's therapist warned us that since she was so young when she experienced her first bout with major depression she was very likely to experience future episodes. Naturally, that warning was always on my mind. I found out when D's therapist released her from treatment that D had spent several months trying to convince her that she was still having hallucinations. D never spoke to me or my husband about hearing voices after the day I told her about her friend telling me about her suicidal thoughts. The therapist believed that it was my D's theatrical personality and naivete that led her to seek a label of some serious mental illness. D did not feel like she fit in with the "normal" kids at her school. She thought that being labelled as mentally ill would validate her feelings of being different. I agreed with the therapist that she was probably right. I lived to regret it.
When D was 17, I saw her experience a full blown grand mal seizure. She had an MRI and a sleep-deprived EEG. The doctors gave her a clean bill of health! We were told that she did not have epilepsy. They surmised that her seizure was brought on by a crash in her blood sugar level. (D and I both have hypoglycemia.) We all breathed a sigh of relief.
Fast forward to D's freshman year of college. D went to school 800 miles from home. When she returned to school after spring break that year, her boyfriend broke up with her. That sent her into a 2nd bout with major depression. She was very fortunate to be treated by a talented psychiatrist. The doctor took a detailed medical history and was able to piece together all of the clues. She informed D that she had temporal lobe epilepsy and that the hallucinations she had been experiencing for YEARS were actually seizures. The diagnosis was later confirmed by a neurologist in our home town who did an MRI and a sleep-deprived EEG. Both tests came up abnormal. I have wondered for the past seven years how the doctors missed it the first time she had the tests run in 2003. D's psychiatrist put her on lamotrigine and the hallucinations disappeared! D has been treated by the neurologist who confirmed the psychiatrtist's diagnosis for the past six years. She is seizure free and mentally healthy. I just wish that we could have a re-do of her teenage years. There was a lot of mental pain and anguish for D, my husband, and myself during those years. D did not tell us about her ongoing hallucinations because she did not want us to be hurt by the knowledge that we had a D who was slowly losing her mind. Thinking about what D went through still makes me feel incredibly sad.
I hope that you will share my story with your D and with her doctor. She is not the only kid whose epilepsy has caused her to have hallucinations. While it is not common, neither is it rare! You sound like a very wise mother who refuses to accept a pat answer. I encourage you to continue to stand your ground and fight for your D.