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Old 08-02-2010, 02:01 PM   #1
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Unhappy Extremely worried!!

I'm going to try to keep this as short as possible but right now I am extremely worried about my daughter. She is 28 years old, and has never had any type of seizure in her life. For us this started last Friday evening, she was playing in the bedroom with her almost 1 year old daughter before putting her to bed. After the baby was asleep she came out of the bedroom asking if either my husband or I could take her to the ER because her shoulder was severly hurting her.
My husband took her and I stayed home to watch the sleeping baby, and my step daughter who was sleeping. After about an hour she called me telling me that she had a seizure when they took her to get x-rays on her shoulder (which ended up being dislocated), and asked if my husband and I could trade places because they needed a blood relative there to sign the paperwork to set her shoulder. He came home and I went to the hospital and from what the doctor said, when the x-ray tech caught her during the first seizure, that set her shoulder back in place. (They put her in a mobilizer sling so her right arm is held close to her body to keep it from moving).
Even though she had a seizure, the doctor sent her home. We were home for about 1/2 an hour and I went to bed to get some rest. The next thing I know my husband (who stayed up to keep an eye on her) started calling for me saying she is having another seizure. While I did not actually see her seize, she was on the floor and I could not get any kind of response out of her. My husband described what happened with her and from my own research on the many different type of seizures and it sounds like she may have had tonic-clonic seizures.
While I was trying to get some kind of response from her, my husband called the rescue squad and we went back to the hospital. This time there, they gave her an IV of Dilantin and a perscription for it for at home with a recommendation to get an appointment with the OSU Neurology Clinic. We are waiting right now for them to call her back after they get the information from our hospital here.
What I'm concerned with is what do we do if they want her to stop the anti seizure meds before they will do the EEG? What are the chances that she will start having seizures again? Right now the only thing she remembers of Friday night is getting home from work. She has completely lost all of Saturday and yesterday is fuzzy as to what we did during the day, and today she is still rather confused. Since the first seizure Friday night she has had a lot of difficulty keeping her balance as well.
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Old 08-02-2010, 03:22 PM   #2
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Re: Extremely worried!!

onemarinemom06: I'm sorry to hear this. This is going to be a long haul for you. First, tell her she can't drive if the hospital hasn't told her already. You don't want her ending up like me and crashing a car and she's got a baby on top of it.

They've given her the meds because they don't want her to have anymore seizures. Everytime you have a seizure you lose brain cells. Dilantin is the first choice of drugs but once she sees a neurologist they might change it. I had a rash from Dilantin.

Even though she's only 28, try to get her in to see an endocrinologist and have her hormones tested. Make sure you keep track on a calendar when these things happen. See if they're happening right before, during and after her period. Look up Catamenial Epilepsy.

Has she had any head trauma recently? Is she around chemicals? Some people can have seizures from having chemical sensitivities. Look into xenoestrogens. They add estrogen to your body and make your hormones go nuts. My seizures are caused by estrogen dominance and menopause. An endocrinologist will test for excess estrogen, the PCP's and neuro's won't do the testing. They think it's a waste of money. All they want to do is give you a pill since that's what they're trained to do.

See if you can get her neurotransmitters tested and get a toxic and non-toxic element test. See if she's low on magnesium, selenium, Vit b6, B12, and more. Have her blood sugars tested to make sure she's not hypoglycemic. Low blood sugars can cause seizures. We live in such a toxic world these days that it's taking a toll on us.

The EEG should still be able to pick up electrical activity even though she's on meds.

Another thing - does she use cell phones, cordless phones, computers, video games, etc. They transmit electromagnetic fields. I've had seizures talking on my cordless phone. Other triggers are fluorescent lights, MSG (it's in everything), lack of sleep, stress, brain issues such as scars on the brain.

She'll need to have an MRI too to make sure she doesn't have any tumors in the brain.
A neuro will probably recommend a vagus nerve stimulator if they can't come up with any reason for her having the seizures. Brain surgery might be brought up too.

I had to change doctors 4 times already because I knew my seizures were menstrual related and no one would believe me except the endocrine doc. Good luck. Look at these boards, they're full of info.

 
Old 08-03-2010, 01:23 PM   #3
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Re: Extremely worried!!

92261~
Thanks for replying so quickly. I have been searching these boards and anything I can find on the web. Although I know that some of the sites are not reliable, I am narrowing it down to a select few to look up information.

Driving is not an issue for her as she doesn't drive and with the two of them living with us, we make sure they get where ever they need to go.

She had her hormones tested a few weeks ago by her gyno, because she is suppose to be having her tubes tied this Thursday. The levels were fine then, and her menstral cycle was right after they tested the hormones.

She's not so much as bumped her head nor is she around any chemicals that I'm aware of. She works as a cashier at a gas station, but she had the same type of job a few years before and not had a problem with any of it.

We have a cordless phone here at home but she doesn't talk on it much, unless my mom calls to talk to her about the baby. She literally spends every possible minute with her daughter.

Although she is on the Dilantin, I think she is still having seizures while she is asleep, because when I try to wake her up, she has a confused look on her face like she is trying to figure out who I am.

Our local hospital did an MRI after the 2nd seizure and said everything was normal. It seemed like they just didn't want to be bothered with her just having seizures although she had never had them before.

The final thing that has me concerned is that today she was asking me how she hurt her shoulder and why she had to wear the sling. It seems like her memory for the whole weekend is going. I am wondering if she had a slight seizure and that is how she hurt her shoulder to begin with and just doesn't know it.
~Becky
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Old 08-03-2010, 02:08 PM   #4
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Re: Extremely worried!!

onemarinemom06: It's very possible she dislocated her shoulder from a seizure. Depending on what kind of seizure she had anything could happen. My muscles tighten up and spasm when I have a seizure. I can feel it afterward. She will lose her short term memory from the seizures.

When I saw that she works at a gas station the red flag went up!!!! You don't realize it but the gas fumes fit right in with the chemicals that our bodies absorb and play games with our estrogen. Look up XENOESTROGENS and you won't believe what you read!!!!

I was just reading a book recently talking about SOY!!!! I can't eat stuff with soy in it and everything they sell these days is laced with soy!!! It's in tuna fish, mayo, everything. Soy is a phytoestrogen and it behaves like estrogen in our bodies and interferes with the endocrine system. That's why I've got estrogen dominance. It increases the estrogen and could increase cancer risks.

Our world is so toxic these days that it's taking a toll on us. I hope she can find some meds that will help control the seizures. I take Keppra and Phenobarbital and I'm still not controlled. My endocrinologist put me on Lupron injections to help reduce the estrogen. I also take progesterone lozenges along with it. The only thing I've noticed after taking the shots for 7 months is that I'm more aware that I'm having the seizures now.

The other thing is to see whether or not these episodes coincide with the new and full moon!!!! My first ride in an ambulance was 2 days after the full moon and my car accident was 2 days after the full moon!!! The doctor doesn't believe me but I know it affects me. The ER's are full around the full moon.

I hope you find success with this doctor. I'm on my 4th one!

 
Old 08-03-2010, 05:29 PM   #5
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Re: Extremely worried!!

Sorry to hear your daughter is having seizures. I know you said she had her hormone levels checked and they were fine but just because the levels are in the "normal range" doesn't mean they are fine. For example, I have epilepsy and the seizures are completely hormone related. Doctors tried to tell me it was impossible and they finally tested my levels and they were all "normal" but the estrogen was the high end of "normal" and my progesterone was the low end of "normal' so the estrogen to progesterone ratio was still off. At that time I was averaging around 30 seizures/week I finally got a doctor to put me on some progesterone and my seizures are now down to the week of my period and I have maybe ten and then I don't have anymore until my next period. So just becuase her levels are "normal" doesn't mean they can't be off.
Hope doctors are able to figure out the cause of her seizures and get them controlled quickly. Your family will be in my thoughts and prayers. Feel free to ask any questions you have these boards are very helpful and people are very understanding and supportive!
God Bless
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Old 08-03-2010, 06:30 PM   #6
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Re: Extremely worried!!

The ER doctors put her on 100 mg of Dilantin that she is to take 4 times a day. From talking to her and what little she remembers, which is really concerning because she's loosing more and more of her memory, it's highly possible that she has had some type of seizure before these last two and we just didn't know it.
My daughter has always been the type of person to enjoy having conversations with family and her few friends, even about nothing in particular and since last Friday (the first seizure that we know of for sure) she's not the conversationalist she used to be. Honestly she doesn't seem to be the same person anymore.
She's been falling asleep anywhere and in any position. We rarely left her alone before, seeing as we all live in the same house, but now I refuse to leave her alone in the house with her daughter. I'm just too worried she'll have another seizure while she's caring for the baby and I'd never be able to live with myself if something happened to either of them because I left them alone.
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Old 08-03-2010, 07:41 PM   #7
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Re: Extremely worried!!

From the way it sounds, it is very possible that she is still having more seizures. It is very possible she is having more than one kind of seizure and some of them are so mild you may not even realize she is having them. It is also possible that her body is just slow a recovering from the trauma of the first seizures. I have more than one kind of seizure and some of them that I have I have them in my sleep and the only way I know I have had them is because of how severe the headache is I wake up with or I have to go to the restroom frequently. Some of them I have during the day the average person looking at me would have no clue I was having a seizure, they would just think I was day dreaming. You are doing the right thing by not leaving her alone especially with a child. While it will be extremely hard on all of you know that it is the right thing to do at least until you know more about what is causing the seizures and are able to get them controlled or predictable.
Hang in there!
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Old 09-14-2010, 08:52 AM   #8
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Re: Extremely worried!!

UPDATE:
She had her appointment with a neurologist at OSU yesterday and the diagnosis is "primary generalized epilepsy: possibly a focus in the left temperal lobe". During the EEG, there was some type of small seizure activity going on in that area. Her MRI however was clean, nothing wrong with the brain itself. For now they are keeping her on 300mg Dilantin, which had to be dropped from the 400mg because her dilantin levels last week were toxic! She is having a hard time coming to terms with the fact that all of a sudden at 28 years old she is epileptic. Thats the part that she (nor I actually) have a hard time coming to terms with. We are currently waiting for OSU's epilepsy monitoring unit to call with a date for her to be admitted for a longer EEG. The part of this that is bothering her is the fact that they will stop her meds in an attempt to get her to have a seizure. Something she does not want to do again, not even in a hospital. I will keep you all posted on what is going on, as it happens. Thanks for all your support it is greatly appreciated.
Becky
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Old 09-14-2010, 09:04 AM   #9
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Re: Extremely worried!!

onemarinemom06: Please, please, please, go and get her checked out by an endocrinologist and get her hormone levels checked.

I was just reading what I posted in Aug. and I have a good feeling that that job with the gasoline isn't helping matters. The chemicals and fumes are getting into her system and making the brain go nuts. It's happening to me. I can't go for walks without breathing in deisel fumes/car exhaust/gas fumes from lawn mowers - it's making me sick. It's a chemical sensitivity. It makes us estrogen dominant.

Another thing I just saw last week on Dr. Oz was about Melatonin. Check into that. Have her take a 1/2 of a pill at night before she goes to bed. It's a hormone and it gets decreased in the brain as we age. It helps us sleep. You can also get it from tart cherry juice. Look it up and read about it.

I couldn't take Dilantin. It gave me a rash all over my body. I think it did control the seizures though.

She needs to be careful if she's driving. I ended up crashing my car 2 years ago and now I can't get my license back until I'm 6 mo. seizure free. I'm lucky I'm alive I guess.

Take care and keep us posted.

 
Old 09-17-2010, 10:58 PM   #10
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Re: Extremely worried!!

When I had a tonic clonic my memory would/will be gone after that. After I had a bad one, I was in the hospital, and I GUESS (I was TOLD; no memory) I was making phone calls (and had a conversation with my friend!), and even saw my Neurologist at his clinic. The doc even told me I responded without showing problems to his exam/questions. I don't recall even LEAVING the ER or calling people!! Think; what would be your reaction if your last memory was laying in the emergency room, and you woke up the next day (over 12 hours later) in your own bed not knowing how you got there!!!

That is an example how the mind can be. The brain is still "short circuiting" after most of the large seizures. It can take from only a handful of minutes to hours for the person to be back to normal. very possible the person is still having seizures, they are just not visible to people around.

The EEG would not be effected by medication. They are looking for spikes and changes (in brain activity) compared to how she is normally.

True, they don't have a baseline for her, but substantial increases in electrical activity (or abnormal activity) are things they can go by. The human brain "typically" behaves in certain ways. They can go from generalities and say it should be between X and Y. When you see a huge spike when it usually wouldn't be there ,that is something to look at.

The clinic/doctor would instruct her if she needed to come off the meds. Besides, reducing/stopping ANY medication is very dangerous if you are not instructed by a doctor.

Sorry to hear about that, but good to know now. A personal note as a patient, I am surprised she didn't have any seizures during the pregnancy if they find she has some type of seizure condition. The change in body chemistry during pregnancy, and shortly after, are believed to have an effect on the seizure activity in epileptics.

--Travis

 
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