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  • First seizure

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    Old 01-13-2004, 05:26 PM   #1
    hootowlmom
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    First seizure

    Hello to all. My name is Latisha and I am a mother of 4. I have two sons ages 4 and 6, a daughter who will be 2 next week and a stepdaughter who will be 15. Unfortunately, on Dec. 19, when I woke up, I noticed paramedics in my room. Apparently at 5:30 a.m. I had a seizure in my sleep. I am almost 35 years old and have NEVER had any health problems what so ever. At first my husband was afraid I had suffered from a stroke, but later figured out it was just a seizure.

    I had MRI's, Cat scans and EEGs done. The EEG merely confirmed I had a seizure and the MRI showed I had a small tumor at the base of my brain. The neurologist thought it was probably benign and that it had been there all my life. He wasn't sure that that was the reason for my seizure. I got put on 300 mg of Dilantin.

    Last week I had another EEG done and I saw the neurologist yesterday. My EEG was normal. However, after looking at MRI again, they can't tell if I had a tumor or if it was just a gliche or a shadow.

    I am to stay on dilantin and go back and see him in April and then have another EEG and MRI done.

    This whole process has blown me away. The most frustrating thing is that on Memorial Day weekend my husband and I had planned to take a trip to Jamaica with 8 of our good friends to celebrate our 10 year wedding anniversary. After six years of having babies and nursing babies, I was looking forward to getting to do something for me.

    Now since this seizure popped up, I won't even be able to drink in paradise. My spirit sinks even further when I read once someone gets put on dilantin the doctors rarely take them off for fear of lawsuits!!! I have also heard many people have to wean themselves off the drugs.

    I don't want to be on this drug if I don't have to be. How often do seizures happen? Is there a chance that since it took 34 years for the first one to happen it could be another 34 years before it happens again???

    I am totally overwhelmed and at a loss for where to go from here. I have lots of friends begging me to get a second opinion. Would that be a good thing or not? Any thoughts or advice of any kind would be appreciated.

    What do you do when you are at the beginning of the road and is there ever an end in sight?

    Thanks in advance for your wisdom.
    Latisha

     
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    Old 01-14-2004, 05:10 AM   #2
    Art_930
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    Re: First seizure

    Hi Latisha - welcome to the forum. Feels like your whole life has just turned upside down, doesn't it? Of course get a second opinion, particularly about the MRI. You want to know what you're dealing with. Re the Dilantin, it's always the first drug that neuros give you because it's been around forever and works for a lot of people. Have fun on your trip to Jamaica - virgin pina coladas are pretty darn good.

     
    Old 01-14-2004, 09:50 AM   #3
    DucatiPro
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    Re: First seizure

    Hi Latisha, I think I am in a very similar situation that you are in.

    In October 2003 I had my first seizure at work, after having the flu and fever for about a week.

    I had an MRI, CAT scan, EEG, and host of blood tests. All came back normal.

    I was put on 100 mg of Dilantin and proceeded to have another seizure.

    The neuro upped the dosage to 300 mg and I proceed to have another seizure. Then 500 mg and another seizure.

    Each time the seizure was less intense and left feeling less groggy afterwards.

    Then I was put on Keppra 500 mgs and another seizure. Then another 500 mgs and another seizure. As before less intense.

    The only odd thing that I noticed is that my left ear was super clogged and the sensation before my seizure was a ringing that turned into a pulsating buzz. At times I could prevent the seizure by blowing my nose and forcing are into my left ear.

    I am also very frustrated because it doesn't seem like docs really put a lot of effort into trying to figure out what may have cause a seizure when all appears normal.

    In my case it may be something to do with my very bad allergic reaction to dust and smoke.

    You should definately be as much of a pest to the docs as possible. If you are not the so called "squeeky wheel" they will just give you as much meds as possible as send you on you way.

    I have seen my general doc, a virus/bacterial doc, ear nose doc, and my neuro. I see a second neuro in a few weeks. I really sucks to be afraid to go places because you think you might have a seizure.

     
    Old 01-14-2004, 06:09 PM   #4
    hootowlmom
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    Re: First seizure

    How long after the first seizure did it take for you to have a second one? It's been a month and I haven't had another seizure. The hardest thing for me is that I was sound asleep when it happened, so I couldn't tell a soul if a seizure is coming on or not. I have no clue as to what the signs are.

    I am just curious as to when you can feel you are making good progress. Is it after 1 month? 3 months? 6 months? a year? I don't know that I have epilepsy just because I had one seizure. (If that makes sense.)

    I do appreciate your response. Thank you very much.


    QUOTE=DucatiPro]Hi Latisha, I think I am in a very similar situation that you are in.

    In October 2003 I had my first seizure at work, after having the flu and fever for about a week.

    I had an MRI, CAT scan, EEG, and host of blood tests. All came back normal.

    I was put on 100 mg of Dilantin and proceeded to have another seizure.

    The neuro upped the dosage to 300 mg and I proceed to have another seizure. Then 500 mg and another seizure.

    Each time the seizure was less intense and left feeling less groggy afterwards.

    Then I was put on Keppra 500 mgs and another seizure. Then another 500 mgs and another seizure. As before less intense.

    The only odd thing that I noticed is that my left ear was super clogged and the sensation before my seizure was a ringing that turned into a pulsating buzz. At times I could prevent the seizure by blowing my nose and forcing are into my left ear.

    I am also very frustrated because it doesn't seem like docs really put a lot of effort into trying to figure out what may have cause a seizure when all appears normal.

    In my case it may be something to do with my very bad allergic reaction to dust and smoke.

    You should definately be as much of a pest to the docs as possible. If you are not the so called "squeeky wheel" they will just give you as much meds as possible as send you on you way.

    I have seen my general doc, a virus/bacterial doc, ear nose doc, and my neuro. I see a second neuro in a few weeks. I really sucks to be afraid to go places because you think you might have a seizure.[/QUOTE]

     
    Old 01-14-2004, 10:39 PM   #5
    DucatiPro
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    Re: First seizure

    Latisha, I have had a total of 10 seizures since 10/30/03.

    5 from 10/30 to 11/1/03. Then another 4 from 11/30 to 12/1/03.

    Another one at work on 12/22/03.

    Every single one initiated by a buzz in my left ear. Which at least was helpful. I had about 20 seconds to get ready.

    Regarding whether you have epilepsy, my neuro says that one seizure does not mean that you have epilepsy.

    I feel that I for the last 3 weeks since my last seizure I have felt better.
    As my congestion has gone away. I was very disoriented and dizzy. I also had problems concentrating.

    Do you feel dizzy or feel different than you did before your first seizure?

    Did you have a flu or fever before your seizure?

    Where you on a diet? Reason I ask is a friend of mine who wrestled in college said that he had a seizure when he was working out alot and trying to make weight. He had a seizure at the gym. That was about 10 years ago. He never had one before and has not had one since.

     
    Old 01-15-2004, 06:27 AM   #6
    mommajessibelle
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    Re: First seizure

    hi latisha this just goes to show that everyone is different i had my first seizure jan.1997 i didnt have another one until july 1999 then the next one was may of 2000 in the year of 2000 from may to december i had a total of 4 seziures after those my next one wasnt until july 2002 but ive had a total of 10 since july 2002 with my most recent one on january 13 2004

    my first few were spread farther apart and now it seems as time goes by they get more freguent and more intense
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    Old 01-15-2004, 11:59 AM   #7
    kimmer1021
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    Re: First seizure

    Hi, maybe sharing my experience with seizures will help to calm you. Late in the year of 93 I started having some odd feelings, something like you'd maybe expect a flashback to feel like. I woke one morning very sick and my husband infromed me I'd had a couple of seizures through the night. He did not call the ambulance, I guess because he had a friend that had seizures regularly and he didn't realize I needed medical help. I went a short period of time and started having a number of seizures, over and over. I was taken to the ER and had some tests. The best the Doc's could tell was that I probably had some scarring in my brain, possibly from a car accident where I hit my head, very hard. I was put on Dilantin and never had another seizure. After 2 yrs the doctor's weined me off of the Dilantin, didn't take too long. I've never had any problems with seizures since. I am careful to not do things like ride roller coasters and strobe lights or things similair do bother me...so I avoid them.

     
    Old 01-15-2004, 12:48 PM   #8
    maggie39
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    Re: First seizure

    Latisha - some doctors do not prescribe meds until there is a second seizure. It's not uncommon for people to have a seizure and then never have another one. However, the flip side of that is that it can be very dangerous if you have a seizure while driving or are engaged other activities like that. The drugs do have many bad side effects however and you are right to be concerned. ALso, yes, if you get off dilantin, you must taper off slowly! Otherwise it can trigger very bad seizure activity. I would get a second opinion whether or not you have a tumor too.

    DucatiPro - how's your blood pressure? Are you especially disoriented and confused for a prolonged period of time after a seizure, or do you recover fairly quickly. If you EEG is consistently normal, and if your blood pressure is on the low side, or if you are not confused after a seizure, you might want to look up on the internet the term "neurocardiogenic syncope"

     
    Old 01-15-2004, 03:55 PM   #9
    DucatiPro
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    Re: First seizure

    Maggie,

    Thanks for the feedback.

    My blood pressure is actually on the high side 135 / 90. Although lately, it has be around 125 / 80, so kind of normal. I was on hydrochlorothiazide but my doc took me off of it when I had my 1st seizure in Oct / 03.

    The first few seizures were really rough, I actually did not know where I was at all for a long time. Especially the 1st 5 seizures.

    However, the last 2 seizures, I got disoriented for about 15 - 20 minutes.
    Then I am pretty much OK.

    However, I have issues with my memory a bit, thinking quickly, and loud noices / chatter.

    In ref to my EEG, it came back abnormal the 1st time, 3 weeks later, it came back slightly abnormal. Doc said that the test showed that I was asleep when I was not spoken to.

    Thanks for your feedback, I was pretty scared initially because I really did not know what was going to become of me!

     
    Old 01-15-2004, 04:13 PM   #10
    hootowlmom
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    Re: First seizure

    I don't feel any different now than I did before the seizure. I didn't have the flu, a fever or a head injury before this happened. I went to bed on the 18th feeling good and relaxed and woke up the 19th to paramedics.

    I haven't been dieting and unfortunately haven't found time to work out lately. I don't have a history of seizures in my family. So, you can see why I am at a total loss as to why this has happened? I tell my husband I just blew a fuse

    Now I am wondering about the medicine - dilantin. I have read that if a rash appears suddenly to call the doctor because you probably need to switch medicines. I don't know if I have a rash or not. The past day or so my knuckles on both my fingers and toes have been itching like crazy. Any redness is due to my scratching. That's the only place that is itching. I haven't switched detergents or anything. The weather has been going from warm to cold alot around here, so maybe it's due to the weather changes. If this is a rash (which I am not sure it is), I wonder why it took a month to appear.

    All I know is that I don't want to have to call the doctor and switch meds. I truly wish I was off the meds and that I things could go back to normal! Ugh! I'm sure you all know that feeling.

    Thanks again for your responses and advice. I truly appreciate it!

     
    Old 01-15-2004, 09:03 PM   #11
    DucatiPro
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    Re: First seizure

    Latisha, yeah I get itchy too. My neuro said that it may be the medicine.

    For me it is annoying, but It does seem to cause to much of a problem.

    If I am relaxing I notice the itchiness more.

    So for me, maybe its nerves, or the what all the doctors like to say relates to everything, "Stress".

     
    Old 01-16-2004, 06:23 AM   #12
    hootowlmom
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    Re: First seizure

    Whew! That makes me feel better. I do notice the itching more when I am relaxed. When I am knee deep in hoopla, I don't have time to notice. I won't worry about it any more at this time.

    Thanks

     
    Old 01-16-2004, 07:11 AM   #13
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    Re: First seizure

    I know what you mean about wanting to get off the meds, I've struggled with it for years. But, I have discovered that with a little faith and the right neuro, things can actually be fairly normal. I don't like taking meds at all and have learned the hard way that more often than not, it's best to stick with the regimen recommended by the Dr. Make sure you trust him or her, though, or you'll never be satisfied with the help you're getting. Best of luck! -Mike

     
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