Unusual 1st ever Epilepsy Episode in 27yr old daughter

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Our 27yr old daughter moved back home in the process of starting over when she had her first ever GM seizure, loss of conscience for 30+ minutes, EMT's, ER Dr all asked about drugs - blood work was completely clean and we weren't worried about that anyway. There is no family history of epilepsy and the only thing that we can trace anything to was a possible vaccination reaction to a flu shot. Before we could get to a neurologist (took a month and 1/2 after GM to get in) she would have quick periods of saying odd sentences, feeling dizzy. Once seen by the neurologist - 2 weeks ago, she was put on meds and further testing is being done now. This is all new to us and we are all in a bit of shock. My husband is wanting to baby her - but she is a grown women! At the same time she isn't supposed to be driving yet - which we were never told of until the neurologist appointment! - and has to tell us when she is showering, no cooking on her own, no swimming alone etc. All of which I can understand but will all this be for the rest of her life? So far no other GM has occurred but she has had many little and a couple of larger 'dizzy' spells even since starting the meds, thankfully no other 'word soup' occurrences have happened since the first week of taking the meds. We understand that stress can play a factor - she's been through a rough time with ex boyfriend & 'having' to move back home, starting over basically, so we are trying to calm her fears in the direction too. Even with her insurance though, her new medicine is at 1000.00 a month - needless to say, we are looking into how to cover that cost not to mention the MRI, sleep monitoring test, 2 ER trips, a couple of CT scans etc. The doctor has a couple of other pills she could be put on but feels that this pill is the best for her condition and said it could complicate or even create a seizure by changing the pill so soon - so thankfully his office is working with us on this. She has been working (we are driving her) but even so ... Have been doing lots of reading up on epilepsy and I guess I just am reaching out for reassurance for me too here. How do young adults live on their own with this? Is it a wait and see situation? What is the determining factor, if there is one? How do we - as parents, calm their fears about losing their independence when we don't know ourselves how independent they are going to be able to be?

Comments

Trips to the ER are not

Submitted by just_joe on Wed, 2018-04-11 - 11:36

Trips to the ER are not needed every time she has a seizure. Unless they at long. Research the learn section they have information. The tests usually done in the ER are for anybody going in there. The tests done by most neurologists would be an EEG and a MRI. The EEG is a test showing the electrical activity in your brain during the time of the test. The MRI will show the brain and anything different on it.The EEG is a brain wave test that is done to find any irregularities or abnormalities like spikes or waves. When seen they know where they happened and they can then look closer at that area of the MRI to see if there is anything there that is different. For me the EEG showed abnormalities in the left lobes of my brain. A closer look at the MRI of the 1960's showed I have scar tissue there.Epilepsy does not discriminate. Anybody can get it be they rich or poor in good health or not, Medications do work and are like blood pressure meds to a person with a heart condition. They stop irregular electrical impulses in the brain (epilepsy) or they control the number of beats to a steady rate in the heart. Yes stress can be a trigger for some people and so can lack of sleep. But then there are other triggers not listed. I slept about 4 1/2-5 hours a night since I was about 13 and lack of sleep never bothered me. Stress didn't either.Please for her sake do not baby her. If she is an adult then she needs to be putting her 2 cents in when she is at a visit to the neurologist. I know many meds have a high price. But if it is name brand there will be a higher price then a generic.I left the house and got my own apartment after my junior year in HS. I worked 40hs a week and saved up the money for my college. I took night classes because they didn't have student loans back in the 1960's and early 1970's. There weren't any debit cards or credit cards so you learned how to manage your money. I take showers and have since I was 13. I do everything my friends do or did. Climbed mountain. ran around, played sports, went to dances you name it and I did it. The only thing I have not done is drive, But I know how to drive and will in the case of an emergency. I was part owner of a small business. I got to and from work. Worked in many different fields of work and currently I ma retired.she would have quick periods of saying odd sentences, feeling dizzy.<<< could be and probably are different seizures or parts of them.You have been reading up on epilepsy. This site should be researched by you. those that are around her a lot and definitely by her especially after the diagnosis. Once you get that then ask the different types of seizures she may have and research them.I hope this helps and she gets seizure freeJoe

Trips to the ER are not needed every time she has a seizure. Unless they at long. Research the learn section they have information. The tests usually done in the ER are for anybody going in there. The tests done by most neurologists would be an EEG and a MRI. The EEG is a test showing the electrical activity in your brain during the time of the test. The MRI will show the brain and anything different on it.The EEG is a brain wave test that is done to find any irregularities or abnormalities like spikes or waves. When seen they know where they happened and they can then look closer at that area of the MRI to see if there is anything there that is different. For me the EEG showed abnormalities in the left lobes of my brain. A closer look at the MRI of the 1960's showed I have scar tissue there.Epilepsy does not discriminate. Anybody can get it be they rich or poor in good health or not, Medications do work and are like blood pressure meds to a person with a heart condition. They stop irregular electrical impulses in the brain (epilepsy) or they control the number of beats to a steady rate in the heart. Yes stress can be a trigger for some people and so can lack of sleep. But then there are other triggers not listed. I slept about 4 1/2-5 hours a night since I was about 13 and lack of sleep never bothered me. Stress didn't either.Please for her sake do not baby her. If she is an adult then she needs to be putting her 2 cents in when she is at a visit to the neurologist. I know many meds have a high price. But if it is name brand there will be a higher price then a generic.I left the house and got my own apartment after my junior year in HS. I worked 40hs a week and saved up the money for my college. I took night classes because they didn't have student loans back in the 1960's and early 1970's. There weren't any debit cards or credit cards so you learned how to manage your money. I take showers and have since I was 13. I do everything my friends do or did. Climbed mountain. ran around, played sports, went to dances you name it and I did it. The only thing I have not done is drive, But I know how to drive and will in the case of an emergency. I was part owner of a small business. I got to and from work. Worked in many different fields of work and currently I ma retired.she would have quick periods of saying odd sentences, feeling dizzy.<<< could be and probably are different seizures or parts of them.You have been reading up on epilepsy. This site should be researched by you. those that are around her a lot and definitely by her especially after the diagnosis. Once you get that then ask the different types of seizures she may have and research them.I hope this helps and she gets seizure freeJoe

Trips to the ER are not needed every time she has a seizure. Unless they at long. Research the learn section they have information. The tests usually done in the ER are for anybody going in there. The tests done by most neurologists would be an EEG and a MRI. The EEG is a test showing the electrical activity in your brain during the time of the test. The MRI will show the brain and anything different on it.The EEG is a brain wave test that is done to find any irregularities or abnormalities like spikes or waves. When seen they know where they happened and they can then look closer at that area of the MRI to see if there is anything there that is different. For me the EEG showed abnormalities in the left lobes of my brain. A closer look at the MRI of the 1960's showed I have scar tissue there.Epilepsy does not discriminate. Anybody can get it be they rich or poor in good health or not, Medications do work and are like blood pressure meds to a person with a heart condition. They stop irregular electrical impulses in the brain (epilepsy) or they control the number of beats to a steady rate in the heart. Yes stress can be a trigger for some people and so can lack of sleep. But then there are other triggers not listed. I slept about 4 1/2-5 hours a night since I was about 13 and lack of sleep never bothered me. Stress didn't either.Please for her sake do not baby her. If she is an adult then she needs to be putting her 2 cents in when she is at a visit to the neurologist. I know many meds have a high price. But if it is name brand there will be a higher price then a generic.I left the house and got my own apartment after my junior year in HS. I worked 40hs a week and saved up the money for my college. I took night classes because they didn't have student loans back in the 1960's and early 1970's. There weren't any debit cards or credit cards so you learned how to manage your money. I take showers and have since I was 13. I do everything my friends do or did. Climbed mountain. ran around, played sports, went to dances you name it and I did it. The only thing I have not done is drive, But I know how to drive and will in the case of an emergency. I was part owner of a small business. I got to and from work. Worked in many different fields of work and currently I ma retired.she would have quick periods of saying odd sentences, feeling dizzy.<<< could be and probably are different seizures or parts of them.You have been reading up on epilepsy. This site should be researched by you. those that are around her a lot and definitely by her especially after the diagnosis. Once you get that then ask the different types of seizures she may have and research them.I hope this helps and she gets seizure freeJoe

Thank you Joe! - yes she is

Submitted by Sassy_5acd8fec0f380 on Thu, 2018-04-12 - 14:02

Thank you Joe! - yes she is now confirmed as an epileptic after the MRI. I have been reading up more on this site - much better info than elsewhere, but you helped relieve a lot of questions about staying independent. I think we all have been on pins and needles since what we now know was a Grand Mal event - ER stated it was a vagavagel event, but family Dr was the one that sent us on to neurologist.Personally knew a couple of people - years ago, with epilepsy - 1 died in shower at 16 during GM and the other lost contact after high school but only heard that he had a very difficult time holding down jobs. It's nice to know that living with epilepsy is not as disabling as we had believed.She has told us that she had periods where she and others found her just staring out into space - and even saw a bit of this ourselves when she was younger but never really attributed it to anything before now. Apparently was a huge clue!I am passing your information of your life on to my husband as he is / was having a very difficult time - wants to protect her. I think talking to the neurologist scared him more than helped but actually hearing - seeing someone else that has this and has had a good life will help too. Had to admit, the concerns he voiced had me on edge too.Thank you for sharing.

Hi Stephanie,My son is 23 and

Submitted by Semperfi268_5a6bcd71c42c5 on Sun, 2018-05-20 - 21:44

Hi Stephanie,My son is 23 and has been dealing with seizures as well as other health related issues for the past 7 years. He can’t drive either. My husband and I take him to work and all his drs appointments. We never leave him unattended at home. Fortunately he had a great group of friends that will pick him up and take him home. He works part time in a hospital. The last year was especially difficult. He had kidney stones that set off a multitude of new health issues. Right now he is still covered under my husbands (his dads) insurance but I fear what will happen when he turns 26. He takes keppra for his seziures and 4 other medications for his other health issues. I pray every day!