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Old 12-01-2009, 01:44 PM   #1
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leenieseven HB User
First Seizure

I am a woman in my 40's and had my first, ever, seizure on Thanksgiving Day. It was a tonic/clonic (grand mal). The last thing I remember is sitting down at the computer to print out a recipe and feeling really cold. I think I even said, "It's cold in here." It was about 10 am and I hadn't eaten breakfast. The next thing I remember is lying on the floor and my husband telling me that I had a seizure.

He took me to the ER where they ran all kinds of tests--all of which came out normal. I was extremely nauseated and cold. They said I was cold from the adrenaline. I returned to the doctor on Monday and had more blood tests done. I will see a neuro on December 9.

So far, doctors suspect that the seizure to be likely related to grief and post-traumatic stress. See, we lost our 19 year-old daughter in August. The autopsy report just came back today that she died from a prolonged seizure in her sleep. I'm the one who found her the next morning. She suffered from nocturnal seizures of unknown origin and was taking Keppra.

You can imagine how frightened we all are now that I had one too. I still have four boys at home and they witnessed it. How can a person go 40+ years and never have a seizure and then all of a sudden have one out of the blue?

I was told that as a standard, they don't medicate after just one seizure, but due to my daughter's history they put me on Dilantin at least until after I see the neurologist. They told me I couldn't drive, operate machinery (even an electric knife), etc. We were unable to put the boys in winter basketball this year because we didn't know how they would get to practices (rural community). My family's world has been rocked emotionally and I feel badly that I have added to it. Doctors did say that it's entirely possible that I'll never have another seizure.

I'm also suspecting hypoglycemia. My dad passed out a couple of times and was diagnosed with it. My fasting blood sugar was 64 yesterday. This morning I took it in hour intervals and it was 98, 87, 74, 72, then I started to feel weak and shaky. Then the medical examiner called and it shot back up to 82. Then I ate breakfast. Could it be possible that my blood sugar dipped to low Thanksgiving morning that caused the seizure? Is it possible for this to be a fluke thing brought on by grief, post traumatic stress, and the stress of the holidays?

 
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Old 12-01-2009, 07:15 PM   #2
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Re: First Seizure

leenie: I could write a book to you. I'll be brief right now since it's late. Please consider looking at other posts that I have made over the last year on these boards. I had my first seizure and first ambulance ride at age 44. After going from Dr. to Dr. I finally found a neuro-endocrinologist who listened to me and agreed with me. Be careful. Because of your age I suspect this is Catamenial Epilepsy. Do some research on it and see if it describes what's going on with you. Keep track of your seizures and menstrual cycles on a calendar so you can have proof for the doctors. GET YOUR HORMONES TESTED!!! I can't emphasize that enough. You could be hitting perimenopause.

How old was your daughter when she started having seizures? Catamenial Epilepsy can start at either puberty or menopause. Seizure meds might not work because it is HORMONAL!!! If it is hormonal you need to be put on HRT. It is caused by Estrogen Dominance. Your body isn't making enough progesterone - the calming hormone. Alot of it is caused by our toxic environment. Be careful of EMF's, cell phones, cordless phones, fluorescent lights, smells, perfumes, cigarettes, gas fumes, cleaning chemicals, computers, stress, lack of sleep, and MSG in food.

I agree with you about the hypoglycemia. Hypoglycemia is one of 40 side effects of Estrogen Dominance. I take Keppra and it has the same side effects as hypoglycemia! Go figure!

Yesterday I started a regiment that is hopefully going to reduce the estrogen on my brain. This neuro-endo doctor did a research study on 400 women with this problem. I was in the study. What he found was that Lupron will help reduce the estrogen in your brain and shut your ovaries down and put you in a total menopausal state. Lupron is used in fertility treatments and also in men for prostate problems.

I could go on and on and on. Be careful of dilantin. It gave me a rash.

Please review some of my other posts to get some other information. I'll be glad to talk to you another time. Good night.

 
Old 12-31-2009, 08:18 PM   #3
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Re: First Seizure

Where did you find a neuro-endocrinologist. I have been dealing with hormone related siezures for 12 years and been on every kind of med with no luck on controlling them if anything the AED's made the seizures worse and more severe. I went from having a couple seizrues a month to 40 a week and they went from lasting 30 sec. at the most to lasting an hour or two.
I have been on and off a variety of birth control pills due to my cycles being so heavy and irregular and some of them helped the seizures others made them worse but can't find anything that controls them. I went to the Mayo clinic and they were the first doc's I found that admitted that seizures could be hormonal. they did some test and verified that I'm allergic to estrogen. I've tried a couple progesterone only meds whtch have greatly helped my cycles and I'm having seizures less again but I'm still having them and unfortuanately they are changing. I'm 27 years old and single with no children. I have been told by gyn's a number of times in the past 12 years that their recommendation is a hysterectomy. I haven't been to a neurologist or anyone really for my seizures in several years because no one would listen to me about them being hormonal. I know since they are changing I really need to see someone but I don't have a clue who to try. I am on complete disability due to the seizures and I have had a number of other chronic medical conditions throughout my life which complicates the problem. Any help is much appreciated!
Thanks and happy new year!
cardshark

 
Old 01-01-2010, 09:12 AM   #4
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Re: First Seizure

Cardshark: I feel your pain. I'm having the same issues. These doctors only want to drug you with stuff that is useless. I'm on disability too. I've lost my license since I crashed my car after having a seizure behind the wheel. I can't get it back until I'm 6 mo. seizure free. I haven't been 4 years seizure free!!!

I found the neuroendocrinologist through my neurologist. I met him in 2007 when he was doing a research study for the NIH on 400 women who have these seizures and aren't controlled on AED's. I got in on the study and that's when I found out that I was having non-ovulatory cycles and had high estrogen. His research has resulted in these seizures being caused by the Estrogen Dominance. What he is recommending is to use Lupron injections to get the estrogen levels down.

Lupron is used for fertility treatments and in men for prostate issues. It's a once a month shot. It has to be approved by your insurance. It's not cheap. Each shot is over $600. If you have insurance then you just pay the copay. He told me that I might have to be on this for at least a year. Along with taking the shot I have to take 600 mg of progesterone a day. The progesterone that he prescribes is a lozenge. It's minty flavored. This whole process is supposed to put one in a total menopause state with the hot flashes, etc. I have never had a hot flash. I'm always cold. The coldness is one of the side-effects of the ED!

I live in MA. This doctor is affiliated with the Beth Israel Deaconess Medical Center in Boston. You would have to ask your PCP or insurance company to try to find you a neuroendocrinologist. If you have a woman's hospital in your area you could start there and ask around.

You have to be careful with the progesterone and the meds you're on. This doctor told me that the Phenobarbital that I take conflicts with the progesterone because they are trying to do the same thing in the brain with the GABA receptors. GREAT!!!

I'm told that this will all pass once menopause is over. When that will be, who knows! It could be 10 years from now. This doctor did not want me to have my ovaries out. He wanted to try the Lupron first. He said if the Lupron doesn't work then I can consider the operation. He thinks it's an unnecessary operation that could result in infection.

I keep track of my seizures on a calendar and keep track of what days in my cycle they occur. Even if I don't have a cycle the seizures still happen right around the time that one should occur and also at the 14 day mark. AND!! Believe it or not, I've written this before, and I'll say it again, they happen right around the FULL MOON!!! Yes!!! Call me even crazier but they do. I've got it documented. The full moon was last night and on Wed. morning my husband told me I was mumbling in my sleep around 5 a.m. I was having a seizure. Yesterday I had one because I realized I had bitten my lower lip.

There are no warnings to them. There are several triggers that I know affect me but I can't just stop living and avoid them all. Fluorescent lights, perfume, cigarettes, gas fumes, cleaning chemicals, MSG, cell phones, cordless phones, computers, lack of sleep,
and possibly tomatoes, caffeine and sugar.

Another thing that I've developed is high cholesterol. After chatting with a lady on here earlier this year, I now contribute it to the Keppra that I take. Amazing!!! This is another thing that I'll have to fight about now. I don't want to take statins. I don't want any of these drugs but right now I have no choice but to take them.

One other thing that I experience sometimes is a feeling of hypoglycemia - low blood sugar. This is one of the side-effects of the ED and also the Keppra has the same side-effects as hypoglycemia. Dizziness, blurred vision, irritability, headaches, hunger, fast heartbeat, anxiousness, to name a few.

I know I've repeated alot that I've written on other posts but I hope some of this helps. I'm here to talk and help you if I can. Happy New Year.

 
Old 03-28-2010, 07:40 PM   #5
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Re: First Seizure

Hi I'm firstly so very sorry to hear the loss your daughter.
I had my first seizure in October 2008, I was 42 when it happened, I was hanging up some washing around 8pm and i can't remember anything, when I came too there were the ambulance men and my husband telling me that I have had a fit but it didn't sink in as I could not remember my name. the doctor at hospital said I have had a tonic/clonic seizure what ever that meant at the time, I was in shock, he said I might have another one but if I don't then I didn't need to have medication. My MRI and EEG were normal but I had another fit in December 5th and 27th the doctor said I am not to drive for 2 years and placed me on sodium valproate, my dose is now 500mg twice daily.he said it could be from stress, at the time the house we were renting was being sold and my husband was very depressed and we didn't have money to move, he had a brake down and was shouting at me, it was very difficult for me. I have one child whose's nearly 4 and desperately would like another, my specialist said to remain on this medication and if I want to have a baby do so but all the things I've been reading is making me so worried about this medication.
I believe that you got your seizure from what the doctor had said, the brain is a very delicate instrument it controls everything the slightest imbalance can affect how it continues it's job. keep taking the medication, you should be able to drive though if you have been seizure free.
Did you know that your daughter had fits during sleep? how does it take ones life?
Your daughter has departed our world so early, she is with God and his angels, In her favorite place that she's always dreamed of being, she's very happy to be there, but she would like for you not to suffer and grief so much.
Take care and God bless

 
Old 03-29-2010, 05:41 AM   #6
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leenieseven HB User
Re: First Seizure

I had a 3-hour glucose test done and it revealed that I am, in fact, hypoglycemic. I have had no further seizures in four months and I'm monitoring my blood sugar levels.

Autopsy results on my daughter revealed that she died from an extended seizure. My neurologist reports that although rare (deaths usually occur while doing something possibly dangerous such as bathing, crossing a street, driving etc.) that it does happen. And since my daughter's seizures were consistently nocturnal only, it likely had something to do with her sleep patterns. She also had a cyst on her brain that all medical professionals say was completely benign, but my husband's co-worker has a son who has nocturnal seizures and a cyst, so we wonder. She was 19 years old, and living at home temporarily while she worked at a local bank.

 
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