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Old 06-16-2005, 03:06 PM   #1
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Stress Seizure Disorder?

My name is Shelly and I had a Grand Mahl at 38. I have never experienced anything like this in my life.

One morning in November 04 I was in my livingroom, hours later I awoke in the ER with my family at the foot of my bed scared to death. Life has been a mess ever since.

The Neuro can't say if I have epiplepsy or not. He has diagnosed me with stress related seizure disorder for now, I started out on Dilantin and that was horrible. It didn't control the smaller seizures that followed. I tried Trilepital and wanted to kill myself. Now I am on Topomax and am doing better.

I am confused and tired of being "tired". I realize this is a board for Epilepsy, but it is the only place where seizures seem to be discussed. Has anyone heard of stress related seizures?

Thanks,

Shelly

 
Old 06-17-2005, 07:08 AM   #2
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Re: Stress Seizure Disorder?

Stress can be a huge trigger for seizures. I am not sure what your neuro means by stress seizure disorder, however. Is he saying that they are brought on by high stress?

Have you been able to do anything to help reduce stresses in your life? Has he tried combining an anto anxiety med with the seizure med to see if that might help?


I hope that you can find ways to reduce your stresses or learn to better deal with it. (I am a highly stressed mom with 2 teens who have dealt with seizures. This stress has really messed up my health in many areas. It takes work to learn how to handle stress better and stay healthier.)

Medications and counseling can sometimes help everything go better! I would be happy to talk to you about all this.
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Old 06-17-2005, 11:57 AM   #3
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Re: Stress Seizure Disorder?

Since I have started Topomax, I feel much better. I have relaxed alot.

I am the Mom of 3 boys, 17, 12 and 7. They are good kids and don't get into trouble or cause me more grief then normal. I work part time in a deli, which is not a stressful job.

I don't feel like I have any more stress then the next person, so I am a bit confused on his diagnosis. Trying to understand what he says to me during my appointments is very stressful, because he goes about 100 miles a minute. I leave more confused then when I went in.

I like my regular doctor these days to regulate my meds as she is calm, soothing and listens to me. She also has told me things about what to do to keep myself sane that the Neuro has never said.

I have read that it is very uncommon for a 38 year old person to all the sudden have epilepsy, is this true? I do have small scarring on my right front temple. But for some reason the Neuro will not diagnose epilepsy.

I am very scared and very confused.

Thank you,

Shelly

 
Old 06-17-2005, 12:19 PM   #4
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Re: Stress Seizure Disorder?

Shelly, I am so glad that you have a good regular doctor who explains things. I would suggest a second opinion on the neuro. I just do not understand what he is saying and it sounds like you do not either! Usually a diagnosis of epilepsy comes after a second seizure.

I just re read your first post. Have you had just the one seizure? Usually unless your EEG is very abnormal, they will not treat or diagnose epilepsy.

It is not that uncommon for seizures to just start. 10 % of the population WILL have a one time seizure sometime in their life and this will not be epilepsy. Between 1-2 % of the population will develope epilepsy in their life time. The MOST common time is before age 10 and after age 60 for a new diagnosis, but it can happen at anytime.

181,000 new diagnosis of epilepsy each year in America.

I hope that your primary doctor can continue to help you. I know what you mean about the doctor visits being so stressful. Sounds like he is assuming stress as a cause...

Hang in there. Push for clear answers.
Ginny
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Old 06-17-2005, 12:22 PM   #5
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Re: Stress Seizure Disorder?

I forgot to say, the Neuro came up with the Stress diagnosis because during a EEG I had a seizure and it was not coming from my brain. Also while in the hosptial a male nurse came into my room to say I couldn't have a shower and he said I got upset and had a seizure. I had no knowledge of this. I think I was in the seizure when he came into the room, he just was unaware and was talking to me.

My seizures are like my body starts ebbing. Does that make sense to you? Like I get huge, then little, over and over again. My feet feel like they are under my chin and I am floating away. I can hear, but my eyes sort of stare off to the right and I am lost somewhere. When I come back, I sigh a big sigh and then I will cry. That is usually my seizure.

Thank you,

Shelly

 
Old 06-17-2005, 12:29 PM   #6
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Re: Stress Seizure Disorder?

Wow, Look up Micropsia or Macropsia, "Alice in wonderland" syndrome and temporal lobe epilepsy.....

Sometimes you get a stress or psuedo seizure diagnosis when the EEG does not pick up a seizure. BUT it is possible to have them so deep in the brain that the scalp electrodes cannot pick it up.....Though neuros KNOW this, they often will say it is not an epileptic seizure if their EEG does not show abnormal....

Temporal lobe is sure possible with your MRI abnormality I would thing. (I am NOT a doctor, I am a mom who reads tons after my son has been misdiagnosed and treatment was taken away..)


I am really surprised that the neuro is sure of this stress Diagnosis yet has you on seizure meds. Usually they would refer you to a psych and no medications.....


Keep pushing!
Ginny
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Old 06-17-2005, 01:06 PM   #7
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Re: Stress Seizure Disorder?

I've had one Grand Mahl.

I was home with my 17 year old. I was on the phone to my sis, just chatting. She said I stopped talking. My son heard weird growling, he found me in the chair drooling and he put me on the floor while his friend dialed 911. I was combative and unresponsive. My sis told me my tongue looked to big for my mouth and my eyes were huge. I vomitted everywhere.

While out of it, they gave me ekg's, brain scan and echo. I continued throwing up. Those tests were normal.

As I was coming to, I could hear myself talking like a baby? And in my head I was appalled that I would be doing that!

I had my first EEG and it was normal. I was put on so much Dilantin, I could barely walk or talk. My level was 38. I had small seizures after that.

3 weeks later all I wanted to do was sleep and my poor husband was an emotional wreck. He called my Mom and my best friend, they came over and got on the phone to my Neuro. I was taken back to the ER and put back in the hospital.

I had more ekg's, another echo, another EEG, MRI, Doppler all that done. (No health insurance)

Neuro changed me to Trileptal and then I wanted to kill myself. He wouldn't change me. So I went to my regular MD and told her what was in my head, she changed me to Topomax ASAP!!

I have read SOME on the interenet. It scares me to be uneducated, but it also scares me to be educated!

I do have one theory of my own about what has happened to me, but when I say it out loud people think I am a nut!!! It has to do with chemicals.

Since you're a Mom, you know how this has all changed and hurt my family. My oldest watches me like a hawk and it kills me to see him do it. I scared him to death. I have lost my license, so he helps drive me around. I am lucky to have such good kids!!!

Thanks

Shelly

 
Old 06-17-2005, 01:22 PM   #8
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Re: Stress Seizure Disorder?

Shelly, My eyes are tearing up reading what you have been through. That neuro really is not a good one since he ignored you saying you feel suicidal on trileptal!! I am so glad your pcp is so good and does listen!!


It is frustrating when the tests are normal or near normal and then help is not easy to get....We face that for my son as well.

To go through all of those tests with no insurange is sooo difficult as well. How are you managing those bills now? Are you able to pay all that off or does it still have to be payed off? Do you have insurance now? If you do or can get coverage, I would get a second opinion....

If not, I would ask the pcp to keep monitoring things. It is so frustrating since the medications have such bad side effects as well as seizures. It is so hard ot be mom and loose your license. Yes, it does have such a great impact on the whole family!

Chemicals can cause seizures. DO you know which ones? Do you find that you feel better if you can avoid those? There are even allergies that can cause non epileptic seizures as well.

I can understand the fear of learning more> It is scary to read so much. It is scary not to understand as well.

I really feel for you and this situation. it is tough on a teen to see mom going through this and feel he needs to watch you, too. I have several chronic things as well and it is hard on my kids and they do resent it at times.....

Hoping that you can get better answers!
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Old 06-17-2005, 02:17 PM   #9
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Re: Stress Seizure Disorder?

How old is your son? Are you epileptic too?


We raise Jack Russell Terriers. My husband's dog goes everywhere with him and was bringing home ticks. So Jim put those drops for fleas and ticks on Jack. I didn't know he had done this and loved all over Jack, as I do every one of our 5 dogs. A few days later, I had the grand mahl.

Jim told the ER doc this and they shrugged it off and wouldn't even consider it. He even went home and got the package and brought it to the ER. My Neuro is the same way.

I'm hoping that they give my license back soon.

As for the 40 grand in bills, we are looking into refinancing our home to pay them off. My husband is self employed, so health insurance is..................

Thanks

Shelly

 
Old 06-17-2005, 05:19 PM   #10
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Re: Stress Seizure Disorder?

Does the packaging have a warning for seizures? Those are really potent chemicals I know. With the dogs, I wonder if there is lyme disease in your area? It is possible to have that and it can cause a neurological problem.

I am so glad you can get that license back soon. Hoping the Topamax can help you, too.

Self employed,,,,,, that says it all. Glad you might be able to refinance and pay them off. All those tests are so costly. I am sorry they have not been a help either!

Ginny
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Old 06-17-2005, 05:44 PM   #11
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Re: Stress Seizure Disorder?

The flea and tick stuff causes seizures in dogs and cats, but doesn't say in humans. I react weirdly to different meds and always have, so that is why I think it may have been a trigger. But can't get the docs to consider it, so I have taken on myself to remove things that I know bother me from my life.

Even though I have a latex allergy, the nurses still use tapes and rubber gloves on me in the hospital. I always have to remind them, even with that bright orange wrist band! So I watch out for me now!! They also tried to feed me sugar free jello too.


The test were of help, they ruled out the truly bad stuff.

As for the bills, I live at the top of California, so part of my bills are from CA and part are from Oregon. In CA as long as you pay something monthly, you can't be turned over to collections. But in OR you either pay what they want per month or they turn you over and it ruins your credit. So we are having to jump thru hoops for OR.

My Neuro suggests that I go to a University for a study so that I can find out exactly what is wrong. Has anyone here done that?

Thanks

Shelly

 
Old 06-17-2005, 06:24 PM   #12
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Re: Stress Seizure Disorder?

My son has been to two teaching hospitals. One is slightly more helpful and at least the doctors did not lie.... long saga.....

Sorry you are having to jump through hoops. We have had to do some of that even with insurance. Our state only has one epilepsy center (the one where they lied) so we have gone to another state for care...


Yes, I do understand sensitivies. I am very allergic to many things. THat is awful that the nurses did not watch out for your latex allergy!! So dangerous....

Yes, doctors do tend to discount things when they do not wish to look into an unusual cause.

I hope you can find someplace to give you clear answers...
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Old 06-17-2005, 07:16 PM   #13
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Re: Stress Seizure Disorder?

I have some questions about Topomax too if anyone knows about this drug.

1. Why does it change the taste of some things? I can no longer drink soda, which is a good thing because I was drinking way too much anyway.

2. Will the tingling in my feet go away soon?

My other questions are.

1. Does anyone else wake up suddenly not being able to breath? This happens if I am sitting upright in the recliner or laying down.

2. Are the lights that flash around in my head at night when I am asleep from my meds?

Sorry to keep asking questions.


Ginny, I looked up the Alice in Wonderland/Micropsia. Sounds a bit like the feelings I have. My husband always tells me I am living in a fairytale!LOL


Thanks,

Shelly

 
Old 06-17-2005, 08:16 PM   #14
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Re: Stress Seizure Disorder?

What a bad fairy tale!! I think you need an editor to re write it!!

Yes, I have heard that topamax can leave that metal taste...that does not seem to go away from friends I have talked to. That is one reason people often loose weight on it, I guess..

The tingling might ease some, but it is also a common side effect. Might be dose related as well...HIgher dose might be less tolerable than a lower one...


Lights? no ideas on that.

Keep asking....That is one way you will learn.....there are some good sites for epilepsy info. Some even send info free. I just cannot tell you. If you look for an epilepsy foundation you might find more answers there.
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Old 06-18-2005, 04:37 PM   #15
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Re: Stress Seizure Disorder?

I just got demoted at my job because of the seizures...I can't seem to get them to stop. When I had Dilantin I went into anaphylactic shock, Tegretol (allergic), Keppra (allergic), I am on Lamictal now but my doses are getting astronomical. It's really starting to get me down.

 
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