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Daughter is asking What Time is it? What Day is it? What do I have to do?
Hi,
I have been searching for solutions for about 2 years for my daughter. She has now, at age 21 yrs complex partial seizures and when she is in them she asks the questions over and over again within seconds, "What time is is? What day is it? Do I have anything to do today? What am I doing tomorrow?" This goes on for 2 mins and last night it was about 12 minutes...the longest ever. She has had one EEG and CT scan. Neither showed anything although as soon as we left from the EEG and got to the car and after 10 minutes she had another complex partial seizure. Last night, she was scanning tv channels and she knew she should stop scanning because her head was feeling weird and then thee next thing she remembers was me at her bed and she didn't know how she got there---she had actually walk over to me, told me she didn't feel good and I took her to her room and she said she was wanted to lie down...so she did. She is on Lamictal 75mg...low dose and was on Topamax prior but she was losing her short term memory on that. I want to know from you, what test should I ask to have done because after 2 yrs I know there has got to be something more we can do in the test arena to narrow down her issues such as VEEG, MRI, PET Scan, MEG...these are the things I've read about and they should be available in the Phoenix AZ area. What are the standard tests I should suggest and how do you suggest it in a positive and cooperative manner? I'm at loss for the next step but my daughter is in her last semester of college for Dietetic Technology at a community college and she wants to continue but I really want this control so she can have a better life because she is so extremely intelligent outside of this issue that began a couple years ago. As a side note, she was 4 times low on estrogen, and 3 times lower than avg on progesterone and on testosterone. She gets worse during the week before her period to the week after. She is on the 3 month birth control as of last month to see if this helps. We are going to the endocrinologist in 2 weeks for the annual checkup and to retest the hormone levels etc. Her brain is over active at night and she's on Lunesta as needed which seems to be every night. So in the meantime, are there brain related scans we can try to rule out or narrow down the part of the brain that is malfunctioning or over-excited? Thank you...I don't know where to go with this. I appreciate your suggestions and expertise.
I have been searching for solutions for about 2 years for my daughter. She has now, at age 21 yrs complex partial seizures and when she is in them she asks the questions over and over again within seconds, "What time is is? What day is it? Do I have anything to do today? What am I doing tomorrow?" This goes on for 2 mins and last night it was about 12 minutes...the longest ever. She has had one EEG and CT scan. Neither showed anything although as soon as we left from the EEG and got to the car and after 10 minutes she had another complex partial seizure. Last night, she was scanning tv channels and she knew she should stop scanning because her head was feeling weird and then thee next thing she remembers was me at her bed and she didn't know how she got there---she had actually walk over to me, told me she didn't feel good and I took her to her room and she said she was wanted to lie down...so she did. She is on Lamictal 75mg...low dose and was on Topamax prior but she was losing her short term memory on that. I want to know from you, what test should I ask to have done because after 2 yrs I know there has got to be something more we can do in the test arena to narrow down her issues such as VEEG, MRI, PET Scan, MEG...these are the things I've read about and they should be available in the Phoenix AZ area. What are the standard tests I should suggest and how do you suggest it in a positive and cooperative manner? I'm at loss for the next step but my daughter is in her last semester of college for Dietetic Technology at a community college and she wants to continue but I really want this control so she can have a better life because she is so extremely intelligent outside of this issue that began a couple years ago. As a side note, she was 4 times low on estrogen, and 3 times lower than avg on progesterone and on testosterone. She gets worse during the week before her period to the week after. She is on the 3 month birth control as of last month to see if this helps. We are going to the endocrinologist in 2 weeks for the annual checkup and to retest the hormone levels etc. Her brain is over active at night and she's on Lunesta as needed which seems to be every night. So in the meantime, are there brain related scans we can try to rule out or narrow down the part of the brain that is malfunctioning or over-excited? Thank you...I don't know where to go with this. I appreciate your suggestions and expertise.
Have you or her spoken to the dr regarding her hormonal imbalance? this does greatly contribute to the seizures. Try to keep a record of them and see if they are more active during the 2 weeks prior to her cycle. Then you can take this to her GYN, and get some hormones. I think this would help solve the problem, as opposed to just "masking it" as the anti seizure medications are doing.
Although more testing sounds like the answer...sometimes it isnt...all it is --is expensive. When I was 20 I started having seizures. They did MRI, CatScans, EEG, EKG, Sleep study, Spinal Tap, bloodwork, to say I am "normal", (other than my brain does not get deep sleep--so I have been on Ambien CR). We started with Tegretol--then when I decided to get pregnant at 24, they switched me to Trileptal. I went 3 years with no seizures, so they discontinued my medicine. Six weeks later I had a seizure. So even now, I have Epilepsy--but no reason WHY. This year I was changed to Keppra (because Trileptal started to decrease my sodium level). ***But one thing I wanted to mention....it can be frustrating, but you cant let her stop trying to accomplish her goals. My dad had to drive me to college for 6 months after I had a seizure (because I had to stop driving)--but I continued, and finished my Undergraduate Degree in the top 10%. I cant say it was easy (after having a seizure, and not being able to remember what happend the last few days--it did take more studying) But I finished school, had a healthy baby, and still have epilepsy. =) Mel
It is common for people who have seizures to never show why in an MRI or EEG. Almost 50% of tests come back competely normal.
In my unprofessional opinion, I would assume her seizures are due to her hormonal imbalance. Especially since there is nothing obvious in any of her brain scans.
Could she try more Lamictal to keep it under control?
Her hormone levels and sleep problems together make me think possible mineral deficiencies. Can she ask her Dr about calcium/magnesium supplements? The combo is helpful for insomnia, seizures and hormonal problems. Many women especially sleep better at night when they take magnesium and calcium supplements - especially women going through menopause. I wonder if she may be deficient in any minerals.
In my unprofessional opinion, I would assume her seizures are due to her hormonal imbalance. Especially since there is nothing obvious in any of her brain scans.
Could she try more Lamictal to keep it under control?
Her hormone levels and sleep problems together make me think possible mineral deficiencies. Can she ask her Dr about calcium/magnesium supplements? The combo is helpful for insomnia, seizures and hormonal problems. Many women especially sleep better at night when they take magnesium and calcium supplements - especially women going through menopause. I wonder if she may be deficient in any minerals.
not a doctor, but you could try a 24 hour eeg. I had the same problem. I take trileptal if you would like to look into that, but that is just my opinion again I am no doctor. Trileptal has minimal side effects. Her doctor will probably know what it is. If the seizures are occuring at night they could be nocturnal seizures.
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