I really hope you don't end up with that label too! I'm not saying yours aren't epileptic, I'm just appalled at how much doctors have our lives in their hands and don't realize that their treatment of us can affect our quality of life for years to come. I know in my case I have had many nightmares about finding myself unconscious or in a seizure, with doctors standing around saying I was "faking it," and doing things to me to prove their point like dragging my lifeless body around on thin bed sheets so I can feel every bump and bruise, over rocks, mountains and cliffs, while not being able to do anything about it because I was "unconscious". It is weird having dreams you're unconscious! And so now I have PTSD-like symptoms from the way I was treated by these docs. And even if my 5% of seizures were 100% psychogenic (which is now proven to NOT be the case), those 5% are just as hard to deal with and just as real of a condition, tho different cause, and all people deserve to be treated with dignity and respect. My opinion of most doctors has now reversed from what I thought of them growing up, I used to think they were caring, knowledgeable people. Now I think they have just enough knowledge that they can either "practice" medicine, or create a mess out of someone's life. Don't get me wrong, I don't think their intentions, for the most part (if they can get past their god complex), are bad, they have just enough knowledge to think they are better than us and nowadays just don't have the time and tools to treat people like they should, but think they are doing us a service when sometimes they are actually harming. I have sometimes wondered if my five percent were actually epileptic seizures that were just so deep down that they didn't show up on the EEG too. I know that my EEGs that do show seizure activity, the activity originates from the area of scar tissue from my old stroke. But I also know that I have had emotional issues, most I thought I had dealt with in the past from trauma in the past, but then partly, like I said, I've been traumatized by dealing with these doctors. I know that is the area I struggle with, by far, nowadays.
I REALLY AM ON YOUR SIDE!
Take care and let us know how things turn out.

Hi Bruins -

I perform and review EEG's for Epileptologists. One thing I know for sure is that a normal EEG does not rule out seizures or epilepsy. Some seizures come from very deep in the brain and do not show up on scalp electrodes. The seizure semiologies you describe sound like more than one type, including possible migraines with aura. Staring spells frequently turn out to be absence seizures, which are generalized, but can also be included in more focal seizures that often have auras, hand and mouth automatisms like you described.

Anyway, a 20 min. EEG is not enough. Where I am we do at least 45 min, and the goal is always for the patient to fall asleep while the EEG is running. Frequently, an EEG in someone with epilepsy can be completely normal when they are awake, but when they get drowsy and start falling asleep, that's when the abnormalities come alive. If a patient has the kind of history you describe with such different types of symptoms, we often have them stay in the Epilepsy Monitoring Unit where they would be hooked up and monitored for at least 24 hours - up to several days in order to catch their symptoms.

I do suffer from migraines with auras a lot. To be honest I've always felt a strong correlation between the two especially mixed in with poor sleep. Im still not even sure if they are seizures to be honest. I dont know.

It was just weird with this latest eeg. I was quite upset because I started dosing off 5 minutes into the test and they decided to make me do the hyperventilating and strobe lights because they said I was getting drowsy. Not sure if something was seen immediately and thats why they were ok with it or whatnot. But after those two I couldn't fall back asleep. Seemed kind of counter productive in that aspect.

So very odd question. After all was said and done, meaning it was time for me to try to fall back asleep during the eeg, I had such an unbelievable urge to urinate. Like omg my bladder is going to explode urge. Is that related at all you think? I literally urinated just before the electrodes were put on.

Hi Bruins.

I sort of stumbled on this forum and would like to help you with this the report you have posted. I am not an epileptologist, but I work closely with them. I do various kinds of testing and monitoring for seizures at a well-known hospital. I know that when I have tried to research my own and family's medical issues I have always appreciated getting a response from someone who actually works in that field and can give me accurate information.

Anyway - the terms used in your report would be difficult for patients to make sense of. That's where I can help.

1. Frontally dominant beta: Beta is the name of one of four basic frequencies. Frequency means how many times it cycles in one second. Beta is the fastest frequency. It doesn't *have* to show up on a normal EEG, but if it does, it is normal when it is limited to the frontal areas of the brain. It often increases during drowsiness and early sleep. It *might* be abnormal if it is coming from all areas of the brain, but is not abnormal if the patient is taking certain kinds of common medication. That primarily includes AED's, benzos and some antidepressants.

2. The Photic Stimulation procedure: The photic lamp *can* cause abnormal discharges in a very few seizure types - mostly Juvenile Myoclonic Epilepsy. The reason a bunch of different frequencies are used is that most people that will have abnormal discharges only have them on certain frequencies. If the test is otherwise normal, it can be helpful to see the discharges to guide diagnosis. The ACNS guidelines that govern our practice tell us that if we see abnormal discharges during a certain frequency, that frequency is repeated to determine if it was actually provoked by the light. If a patient starts having clinical seizures during photic stimulation, we stop the light to prevent the patient from going into status and notify the reading epileptologist immediately. A clinical seizure is one that has abnormal EEG accompanied by body movements that are consistent with seizures. Photic Driving: This is a phenomenon that some, but not all, people have. Light is processed by the back area of the brain. The electrodes on those spots can show frequencies that are coordinated with the light. For example, if the light flashes at a frequency of 15, then photic driving means there is a rhythm coming from the leads on the back of the brain (called O1 and O2) that is at 15 cycles per second, exactly like the light, and it is "time-locked". In other words it starts when the 15-frequency light starts flashing, and ends when it stops. It is not abnormal. Your report says that there were no abnormal clinical or electrographic responses. Clinical response would be abnormal body movements and electrographic would be brain responses showing up on the EEG. The symptoms you reported taking place during photic stimulation were apparently not considered abnormal by the reading physician. Sometimes the flashing light can make people feel anxious, and sometimes the rooms are cold, so maybe that contributed to your symptoms?

3. Hyperventilation is another "activation procedure" that can be diagnostic for Absence Epilepsy. It should be done on every EEG exam unless the patient has contraindications, such as very bad asthma, heart conditions, COPD, stroke, sickle cell, and a few others. The report says you had "modest symmetric build-up of slow activity." That means that you had a moderate "build up" of a normal response to hyperventilation for children and even young adults. It is characterized by moderate to high amplitude waves that are slower than 'normal' - usually about 4 hz (four cycles per second). Symmetrical means it was showing up the same on both sides of your brain. If it was only showing up on one side it could indicate a tumor - so it being symmetric is what you want. The reason they make a big deal of it on the report is because if you were not hyperventilating and those wave forms showed up, it would be an abnormality. The reason it shows up has to do with hyperventilation changing the balance between oxygen and carbon dioxide. And this particular activation procedure is nearly 100% diagnostic for Absence seizures...meaning that if hyperventilation is done adequately by the patient, it would be rare for it to not provoke a seizure.

4. Sleep deprivation: This is actually considered another "activation procedure." Being sleep deprived can provoke seizures or at least abnormal discharges in people with certain epilepsy types. The main purpose, however, is to make sure the patient can sleep. A person with epilepsy can have an absolutely normal EEG while they are awake. BUT WHEN THEY GET DROWSY AND START FALLING ASLEEP - THE EEG CAN COME ALIVE WITH ABNORMAL ACTIVITY THAT WE OTHERWISE WOULD NOT SEE! I made that in all caps to make it stand out. Falling asleep during an EEG is one of the most important parts of the exam, and at my hospital we ask outpatients to come back most of the time if they did not sleep during the exam. Sleep is that important. We also run outpatient routine EEG's up to an hour in an attempt to capture sleep. 20 min. EEG's go against ACNS guidelines that require a 20 min. background on top of activation procedures and sleep. We not only send out an information packet to patients before the exam explaining sleep deprivation, but we also call them the day before to remind them to get no more than 4 - 6 hours of sleep that night in order to take a nap during the test. If you have another EEG, now you know. I would also ask that they not perform photic until the end of the exam. I do hyperventilation first, because it can also help them fall asleep and I do photic last to avoid making patients anxious or overly stimulated before sleepy-time So.. if you continue to have symptoms concerning for seizures, you may want to ask for another EEG that includes sleep.

I hope I've provided some useful information. I am not a physician and do not diagnose people or give medical advise, but I get great satisfaction when I can help someone understand a complicated and sometimes scary testing procedure.


Crescent Moon

Thanks CM

Still awaiting my results from my sleep deprived eeg a few weeks ago. Nothing yet. Called dr friday and they still hadn't received them.

The sleep deprived eeg went like this.

Try to lay there with eyes closed. I did for a few minutes, then they said I was about to fall asleep. So they decided to have me do the lights then the hyperventilating. After that they told me to try to fall asleep but I couldn't.

Still curious why it's taking so long to get results but im assuming the tech would of told me if I had a seizure. If you don't mind can you read my last few posts on this topic and give me your thoughts. Also im 30 years old. Thanks!

Well.. if you didn't fall asleep, then the most informative half of the EEG is missing. Being sleep deprived in itself has no value. Its falling asleep that counts. I would complain to the doctor that ordered the test about how it was done. As far as needung to urinate.. I've never heard of that having anything to do with the test. People who have GTC seizures (the 'big' ones), can lose bowel or bladder control during the seizure, but it doesn't sound like you had a seizure during the exam.

I can't say how results are handled other places, but at my hospital Only epileptologists read EEG's. They are read the day of the exam. A report is put on the patient's record and if there are seizures or unexpected abnormalities in a patient who is not being treated, the ordering physician is notified by phone immediately. If I were you, I'd call the testing place and ask them directly how to get the results. As a patient you have the right to get your medical records. However.. since you didn't sleep, it may again be normal. Next time the testing question comes up with your doctor, I'd insist that he find a place for you to go that will truly give you a chance yo fall asleep and run the test longer than 20 min.

Yea it was rather annoying. I laid there for about five minutes and they said I was falling asleep then made me do the other stuff. I may have dozed off again after it but I honestly dont think I did. I was exhausted so maybe I did. I dont know why I did that back arching small convulsion thing though. That was really odd for me. Lady said after the hyperventilating and lights I was laying down for a half hour. Sure only felt like a few minutes but maybe im wrong and did doze off a little. I just remember clearly at the beginning of the test I was falling asleep and they made me do that stuff. Dont know maybe they had gotten what they needed in that few minutes time. Oh and to be clear the first eeg was 20 minutes (the non sleep deprived) this one (sleep deprived) was probably 45 minutes or so. They thought it was a non sleep deprived and I had to show them the drs report saying he wanted it sleep deprived and she said she would note that.

As of now dr is treating me with depakote to be safe. The hospital usually uploads their reports or labs ect instantly to the patient portal as soon as the report is done. Not even up on that yet. Ill call again tomorrow see what's going on.

ok.. so now it does sound like you may have slept. When patients sleep, the test always seems shorter than it really is. When I'm running an exam and a patient has a seizure (both electrographic and clinical) during the exam, I always go in there. I test their responsiveness, check for stiffness, make clinical observations that don't always show up clearly on the video (i.e. are eyelids twitching?). I would always immediately inform the epileptologist. I make notes about my clinical observations on the EEG recording. With all of that going on, the patient or family are generally aware they had a seizure. However, other hospitals may have their own protocols that are different from the ones I follow.

What really surprises me is that your report is not yet available. Your physician should be driving them nuts and calling every hour for the results. If there are any abnormalities on there, then I'd really be upset.

In any event, if it comes out normal and you continue to have symptoms, the next step would be an Epilepsy Monitoring Unit where you would be hooked up in a more secure way and kept in the hospital for at least 24 hours - hopefully to capture one of your episodes.

With respect to the concern about "convergence disorder" or whatever, that would be referring to episodes that are non-epileptic in nature and believed to be caused by stress/anxiety. Epileptic means it is coming from excessive synchronous firing of neurons in the brain. Non-epileptic can be caused by a lot of different things. Dehydration that causes an imbalance in electrolytes is a big one. Another non-epileptic type seizure is what can happen to juvenile diabetics. They take insulin, and if their blood sugar drops too low, they can have a seizure - but it is not an epileptic seizure and does not need treatment with medications. I have juvenile diabetes and actually had one yesterday morning - first time in probably 8 years. My blood sugar registered as 17 by the paramedics that my kids called. Anyway, non-epileptic seizures can also be caused by stress and anxiety. Those are episodes that generally improve with psychological support. It is not uncommon for teens who are being abused in some fashion to have non-epileptic seizures. It's like a cry for help that gets them in front of people who can hopefully figure out what's going on and get them in a safe place.

That said, you've also described migraines with auras. That is not uncommon. I had a 13 y/o girl patient who had a long string of auras that looked like a stroke before she had the migraine. Her EEG was a mess too (for 24 hrs after the migraine). She had basilar artery migraines. Anyway, you do seem to have a lot going on that deserves a thorough investigation. Longer monitoring in an EMU would be helpful, especially if you have episodes frequently.

Bruins -

I just read back more thoroughly - the descriptions you gave of the episodes you've had that I think you said your wife has seen?

Here's what I know:
Pelvic thrusting, raising legs in the air and "bicycling," and manipulation of genitals are common semiologies of frontal lobe seizures. Pretty much exclusively. Frontal lobe seizures often include hand or mouth automatisms (like picking at a button, or two fingers working on each other). I think you said you had a tbi? Where is the injury located? TBI's can definitely cause seizures.

Bad smells are called olfactory seizures and generally come from around the uncus - which is too deep to be picked up by surface electrodes. As others have said, these kind of sensory symptoms (can include bad taste as well) are simple partial. Taste (gustatory seizures) are usually described as metallic. Olfactory seizures are usually described as like a skunk, dead body, burning rubber. I've never heard of it being a pleasant smell. There is a unique seizure type called Gelastic seizures that comes from the hypothalamus, usually due to a hamartoma, and the seizure semiology is laughter. This usually shows up in early childhood.

Most important thing for you to know is that a normal EEG does NOT RULE OUT EPILEPSY!!