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no diagnosis for seizures
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susannahstuckey posted:
The summer before 9th grade, I had partial seizures in my left hand almost every day and a grand mal seizure that lasted for 30 minutes. The grand mal started while I was sleeping. I went to the doctor and had an EEG and an MRI that both came up clear, so I was told that I do not have epilepsy. A few months later, I had another one that also started while sleeping, but was about 5 minutes. I continued to have the partial seizures in my left hand throughout this time period, although i didn't know that that was what they were. I had another seizure just a few days later that also started in my sleep, which is when the doctor put me on Trileptal. I had a couple more EEGs, one that was a sleep EEG. They all came up clear and I haven't had a seizure because I'm not on the medicine. I still have auras all the time. and I know there is still something wrong with me. The doctor has recently scheduled me for another EEG in a couple months, and I want him to do some other tests. Has anyone experienced anything like this or does anyone know what I can do about this? I am about to be 17 and still very scared and my anxiety/depression problems have skyrocketed because of it. Please help, Susannah
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dancer86442 responded:
Good Morning Susannah,

Welcome to Epland. Let me see if I get this rite. You have had szs off & on for 3 yrs. You are on NO medication? OK?

First, You have had more then 2 "episodes" (includes partials & auras). You have Epilepsy. You don't need a DR to tell you that. Tests can Most times detect the problem or source. But, EEG's won't pick up activity if it is too deep in the brain or no activity at the time of the test.

What can you do??? 1. Start doing some "homework". You are your own BEST advocate & you need to be prepared to face your DRs w/ what YOU have learned &&&&& what you have experienced. Have you started an EP journal? Start off w/ the history you have given us. Try to remember what others witnessed or ask them again. When you sense an aura, (aura's are szs) take note of it & any other "odd" behavior/feelings/episodes. Keep up w/ your journal on a daily basis. Include meals/bevs, OVC medications/prescriptions, activities. ie: TV, comp, awake/asleep. BTW: Szs in your sleep are known as "nocturnal seizures." Include your anxiety/depression. Take note of your Mthly. Does sz activity appear more often, just B4 or after???

Questions for your DR!

www.nomoreseizures.com/

Are you aware that EP can cause Depression? Anxiety can TRIGGER szs. PLEASE, tell your DR. If you are unable to tolerate the symptoms anymore he will help you find a counselor/psych. Do not ignore those feelings. What else can you do? Start TREATMENT for your szs. They are NOT going to go away on their own! You can learn about medications & alternative treatments. Then the choice is up to you. Keep in mind: What works for one, doesn't always work for another. Treatment is "trial & error" for ALL of us. Visit the links posted in our "sticky" post "weblinks for Epilepsy" Learn about ALL the aspects of EP. From history to "new" research.

You are a "normal" young lady. Just use "common sense". Take One Day at a Time. Patience, Time & Support will get you thru this. EP WILL make you stronger. IF you don't let EP rule.

What other tests would you like the DR to run? Good news IS your MRI is clear. No tumors, lesions, etc. EEG: Like I said Time & patience. Maybe, like me it will always be "normal". But, I still have szs if I don't take my meds.

Keep talking w/ us. We will be here for you. You are not alone.

God Bless

Love Candi & family
 
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susannahstuckey responded:
thank you so much for your info, Candi. I am on Trileptal for the seizures and I haven't had a "full on seizure" since my doctor put me on it. but I do have auras. I am going to start my journal right now. thanks again for the info!
 
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dancer86442 responded:
Good Morning Susannah,

Thank You for replying. I do hope you will keep us posted. Your "auras" are seizures. You really do need to get them under control, too. Ask your Neuro about a small increase in your meds. IF it has been more then 6 wks since you started your Trileptal.

HUGS!

God Bless

Love Candi & family
 
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momielang responded:
I definately can relate to your frustration. I must say however, that i am well past 9th grade. Just this past oct, i had my first grand mal seizure in my sleep as well. I also happened to be nine months prego so it was a big deal. I had all the tests done and nada. So my neurologist told me to just chill out and lay low. Just last week i had another grand mal seizure while sleep walking. done and still nada. I was prescribed medicine...Lamatrical or something like that. So i'm just confused and depressed to be diagnosed...plus u cant drive for 6 mos....maybe u need to try a different doctor or neurologist
 
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aslgirl711 responded:
the same thing happened to me when i was seventeen, im now twenty and dont worry you dont have epilesy if everything came up clear, i started haveing random sezuires up to 100 a night at certain times or for no reason and the doctors couldnt figure it out. my depression got worse too, your not alone. my doctor said tat the sezuires are from my anxiety/depression and i have to monitor my emotions, aka i cant be too happy or too upset or i can have one. ask your doctor about lexepro, nerortin, ativant or valum those are the meds tat helped me. also try and keep a log everyday of everything from what you eat to what you watch on tv and when, everything tat can help you notice a pattern and helped me. hope things get better feel free to email me at aslgirl711@aol.com ashley
 
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chefgabe responded:
so i have diagnosed epilepsy and have had it for almost 6 years now. i too went threw the mystery eeg 2 times and the mri before they took me off all medication and put me in the hospital at the UCSF epilepsy center for 7 days under a video eeg so they could pin point the time . my own neurologist at the time told me i was making it up and causing the seizures but if you have ever had a full gran mal then you know that you would never want that burden. i am only 27 now and am finally able to go back to college to finish my food science degree. so good luck to you. i hope you get this. gabe or chefgabe
 
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mollymoo893 responded:
Hey Susannah, I have been having the same kind of issue. I have been having seizure almost everyday for 6 or 7 weeks now. i have had two EEG's and an MRI,both normal. They have tried to tell me that it is a psychological issue, because i have gone through depression and what not. They are pretty scary so i totally understand. And just coming out of depression, and then having this start has been hard, but i have figured out that i can do it. There are people who have had seizures for their whole lives nad they are doing well. I just went to see a my Psychopharmacologist (big word, i know ) and he put me on Lac-something or other. i havent started yet, but it will help deturmine wether or not it is nuerological or psychological. I am 15 now, and i find it weird that they have started all of a sudden...but for right now the doctors are calling them psuedoseizures, just meaning they have no idea what is causing them, even though they are real. I wish you luck, and i will be thinking of you.

Lots of Love, Molly
 
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daisyausoleil responded:
I totally know how you feel. Mine started at the end of 8th grade. I had a couple EEGs and a MRI, all clear. I kept having seizures though. My neuro said I had epilepsy even though none of my EEGs showed any spikes. I've been on meds now for over 4 years and happily have been seizure-free for 3. If you're still having seizures -especially grand mals - you have some form of epilepsy. Even if an EEG shows nothing, it doesn't mean nothing is there. None of the EEGs or tests I've ever had have shown anything. I think you should either explain this/talk more to your doctor, or find a second neuro to get a second opinion. Good luck! I know how annoying all this can be, esp in high school!
 
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Patrick00 responded:
Hi Susanna, I've been having seizures since I was four years old and an EEG never picked up any sign of Ep. The reason why was because the focus is small and deep in my brain. As I got older my seizures became worst and I pushed for every test I could get. The two test I would push for if I were you(If your determined to have proof) is a VEEG and a pet scan. A VEEG is an EEG that is vidio taped over time. You have to spend a few days in hospital off of your meds and hope that you have a seizure. A pet test is a simply a dye that is injected into you before your scanned and may show up a hot spot. I'm sure your Doctors will want to try increasing your medication first or try adding a second one to help gain control, many people find the right mix and live a normal life and I hope your one of them. Most important is to not let this beat you. Use it to make you strong.

Patrick
 
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shannonkpp responded:
Dear Susannah,

Your story sounds almost exactly like my history with seizure disorder. I began having partial seizures with an aura of odor at puberty. I saw my family doctor who treated me for anxiety - I am convinced he gave me sugar pills. The seizures stopped until my senior year in high school. My EEG was normal and they treated me again for anxiety. The medication really sedated me but didn't help the seizures at all. I saw several doctors at that time, none of whom seemed able or willing to diagnose me with epilepsy. (At that time, a diagnosis of epilepsy was a stigma.) Finally, I saw a doctor at Johns Hopkins Hospital who quickly diagnosed me as having temporal lobe epilepsy. He told me that it is not uncommon for people with partial seizures to have normal EEG's. I was treated with Dilantin and Phenobarbital. They were very sedating but controlled my seizures until I became pregnant.

It is very important to find a doctor who will treat you for your seizure disorder. If you continue to have seizures, they may become more frequent and more severe. Sleep is a particularly difficult time because it lowers your seizure threshold. If your sleep is repeatedly interrupted by seizures, you can become sleep deprived, which only makes the situation worse. At one point, I was having seizures every 2-3 hours every night. I was exhausted and sedated by seizure medication.

The good news is that I have been seizure free for many years now and I just take Dilantin. Most of the time I don't even think about it.

You might try to find a teaching hospital - where doctors are trained - in your area to see if they have a neurological diagnostic clinic. They tend to see more patients and are better at diagnosing patients. Try the big universities in your area to see if they have medical schools.

Good luck. Having seizure disorder is not the worst thing that can happen to a person, but it is something that needs to be controlled.

Shannon
 
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Meetz responded:
Hi Susannah

My seizures started when I was a baby, so I've had them for almost 45 years now. Originally they started out during the daytime, but I only had 4 in 18 years, then I went toxic, changed meds, had a child, things started to go out of control, and then in between 2 more pregnancies, my seizures morphed into strictly nighttime seizures. They were still a bit out of control, but not nearly as much. Now, things are better.

EEGs are literally a "snapshot" in time...just because it's clear at that point in time means nothing. I've had clear EEGs for over 40 years, until about 3 years ago. And trust me, I HAVE E. If you could possibly get hooked up for a video EEG that lasts at least 48 to 72 hours, or even 96 hours, that would be excellent, and the doctors would be more likely to catch something. I just finished a 96 hour portable EEG 2 days ago (YIPPEE ) and hopefully the addition of the new med has made it clean.

You are NOT under control if you are still having auras because auras ARE seizures. Please ask your doctor to also do an MRI (to look for physical causes in your brain) and bloodwork to determine if there are any hormonal imbalances that may be causing your problem.

I posted the other day with some very specific things that I post on another forum (as a moderator there). You might want to check it out.

I do want to ask something: Have you set up a nightly routine before you go to bed to RELAX? I mean like turning off the TV, turning on some soft music, meditating/writing in journal, and then lying down to go to sleep? Or something along that line?

Something else to consider: I have no melatonin in my body because of cyst in my pineal gland, which severely affects my ability to sleep, which in turn can cause seizures. I have to take melatonin everyday, as well as a few other things to help out (I have four types of E). This would be something that would be found on the MRI......

Good luck, and take care.

Meetz
 
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aruzer responded:
When I was really young I had what they call "petiet mal" seizures, basically I would talk and then stare off into space (essentially losting consciousness for a couple of seconds,) but the doctors too never found anything wrong in my EEG. I evnetually out grew them, but in 8th grade when I was planning a trip to Europe, about to fly alone which I was extremely anxious about, I had my first grand seizure. After that throughout high schoolI started having staring episodes every couple of months, mostly whenever I was anxious, yet every EEG turned out normal. That last until my senior year, when I was scheduled for an appointment in order to get cleared to get my liscence, and on that particular day, I started having staring spells, because I had an EEG during that active petiet mal period my doctors were finally able to see that I was experiencing seizure episodes, and put me on a low dosage of lamictal. Although these happen in your sleep, is there anyway you could go to the hospital immediatly after in order to see if the EEG will catch the abnormal activity? Maybe they are linked with your anxiety?
 
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lizobss responded:
Hi Susannah. I just wanted to tell you that I understand how scared you are. My son was just diagnosed with epilepsy this past Oct. at one month of age. He had a seizure where he'd stopped breathing, turned blue/gray, and went limp. After what seemed like forever, he started breathing again. We went to the hospital and were admitted. I told them I thought it was a seizure and they gave him two EEGs, both only one hour. Neither of them showed anything, so they told me it wasn't seizures. When no other tests came back with any other info, they were ready to chalk it up to reflux and discharge us from the hospital while he was still having episodes where he'd stop breathing. I insisted they put on an EEG until he had another episode and sure enough, once they caught an episode on the EEG they were able to see the spikes and where they were originating from. My advice for you is to NOT GIVE UP. You and your parents need to advocate for yourself. Ask to be admitted and have a 24 hr EEG (at least). I don't know how long between your seizures (or auras) but if it's not too long, I would insist on being on the machine until you have one. That was the only way we were diagnosed. If your current neurologist won't comply, find another one. You need someone who will take you seriously.
 
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sonhelp responded:
Hi I am am a mom whose son has had seizures since he was born. He has had about 50 grandmals (stopped breathing, whole body shaking, blue) they were often when he was sleeping however the past year they have become more frequent and during school hours. Our neurologist sent us to a hospital outside of our area to be on long term monitoring. They took him off his meds in 5 days and saw no seizure activity on the eeg. However, the first night even on meds he had his seizure. his hands go up to his face, his wrists shake his eyes flutter and he drools then back to sleep. The dr saw this and said well it was something, but not a seizure it didn't show up on eeg. I was pisssed. Two days later he said MOM i'm going to be sick he threw up and went into a daze for 25 min he could not respond his eyes were open but touch did not effect him nor did talking to him he just sat there staring lost. After about 30 min he snapped out of it and was ok. They lost the eeg report his monitor was full. Two hours later the same occurence however he passed out after a 25min stare and you could not get him to move or respond the dr came in how releived was I well it turned out to be a joke. He was shocked at how bad he looked when he was stariing and then how he was lifeless. again no eeg was found. I was pissed! they saw the signs and have heard the symptoms from the teacher and becase the eeg showed nothing the said it was a sleeping disorder. They sent us to a sleep center and the nurse watching it said she wasn't seeing a sleeping disorder she saw something but wasn't sure what it was. So now we just wait and see what they come up with. He has not had a grandmal, however everycouple days he has the stare and the out of touch episode for hours. He also has always had the shakes in his hands, but now off med he now had twithches in his shoulders and hands and fingers. He is a uneasy sleeper, but however I am so confussed how they can see and hear major signs of epilepsy and because the eeg shows nothing they don't help us. He is off his med and I'm scared to death that at one point that hes going to have a grandmal and i'm not sure how bad its gong to get. Our neuro has us on page if we need to have him meet us at the hospital , but its still scarry people have died and im scared I've also heard even off med sometimes it takes months to have grandmals, but he is having abnormal activities during the day so i'm just like when is the big one coming. Anyone have any advice or help?


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Journals posted by Meetz
Meetz posted: Hi there. I don't want to sound bossy or presumptuous, but after 44 years of practice with E, I have a bit of experience. I ... More
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