After trying to explain to three different neurologists that I have long-suspected I might have some sort of seizure disorder, I got one to order an EEG. I've had several lay-people tell me that I sound like I might have non-grand mal seizures, but then when I went to doctors and expressed my concerns, they just brushed them off and told me I was just depressed.

Here are some of the reasons I think I might have issues with seizures:

1) This hasn't happened in a while, but I used to just randomly start smelling a burning sensation out of nowhere that no one else around me could smell. One time, I jumped out of my bed and went running into the hall because I thought my house was on fire, and my dad was just like, "...there's no smell."

2) Sometimes, when I'm overtired, before I fall asleep, I start involuntarily biting down every few minutes and continue doing this until I fall asleep.

3) I've had several incidents where I was at my computer (so I could tell around what time it was when I 'fell asleep'), fell into a deep sleep and had a really vivid dream, and then jolted awake about 4 minutes later with an awful headache. My understanding is that real dreaming doesn't happen within a few minutes of falling asleep, so I've wondered if this is some sort of seizure instead. I tried explaining this to my neurologist, and he responded, "Daydreaming can happen anytime." I'm not talking about daydreaming; I'm talking about, my head is down on the bed, table, whatever, and my eyes are closed.

4) I'm really sensitive to flashing lights and fluorescent lights. They give me a really intense headache and make me feel like my brain is going to explode, is the best way I can describe it. It's difficult for me to drive through areas where the sun is flickering through the trees because it makes me dizzy and nauseated; on bad days, it results in me having a violent gagging fit behind the wheel or even just turning around and going home because of how sick I feel.

5) Sometimes, I just go into a daze out of nowhere where everything around me seems slowed down and muffled, and it's really difficult to think straight or respond to people. I *can*, though, it's just hard and therefore embarrassing. I'm not completely unresponsive, though.

So my situation is atypical. I don't have the convulsions that people think of when they think of seizures or anything. Maybe I don't have seizures at all. Who knows. I did have one urgent care doctor ask why I've never had an EEG before after explaining a few of my symptoms to him, but he didn't accept insurance and I couldn't afford to make him a regular doctor.

I'm supposed to be scheduled for an EEG within the next week and was wondering if there was anything that one should do to maximize the chances of any seizure activity to show on the test. I ask because I was reading about the test and found that several resources claim a lot of people have seizures, but they're never detected on an EEG.

Let me know please. Thank you.

pearlescent,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

You might want to ask your family Dr. to refer you to see a Epileptologist (Dr. specializing in epilepsy.) You can usually find an Epileptologist at a big hospital or a University hospital. These Drs. know how to treat both epilepsy and other neurology disorders. These Drs. will do tests on a person and find the cause of the epilepsy, keep them on the least amount of sz. medicine, they are updated on any new treatments for epilepsy.

Please keep us up to date on your situation. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Hi pearlescent,

Welcome to the forum! From what you are describing it sounds like you may be having simple partial sz. also known as aura sz. often this happens to me and I will start to smell a gas or deviled eggs along with seeing colors flash back and forth in my eyes and get a nervous feeling in my stomach. The moment any of this happens I tighten up all the muscles in my body and make my hands into tight fists and this will stop the sz.

When you have the e.e.g. done ask the tech or Dr. ordering the test to have them flash different color strobe lights one at a time because it sounds like you may be photosensitive which means certain colors are triggering your sz. This happened to me with flourscent green, amber, and bright white. This may be one reason why you feel you may have been dreaming while on your computer also.

Darlene is correct start seeing an Epileptologist they specialize in epilepsy and know how to treat it along with giving a person the least amount of meds. to control the sz.

From now on get a calendar and write down each time you feel a possible sz. write down what time it happened and a description, by doing this the neuro you see may see a pattern in the possible sz. I would also start taking vitamin B12 1000 mcg. once a day this will help calm the nerves and reduce sz. you can buy it right over the counter so you don't need a prescription. I wish you the best of luck and May God Bless You!

Sue

Thank you for the warm welcomes, Darlene and Porkette! I will keep the suggestion about an epileptologist in mind after seeing how my EEG goes. I have actually been taking B12 supplements for almost a year now, and I have felt a little better! Not 100% by ANY means, but I used to be way worse off than I am now. My B12 level used to be 344, and now it is 891. So interesting you should say that. I will also make sure to ask that the technician flash the different color strobe lighting.

Another possibility that I am now considering is normal pressure hydrocephalus after seeing a video about a woman who had it. One symptom that I don't think I mentioned in my original post is that I urinate a LOT...as often as four times in a single hour, and once I have to go, I have to GO, or I'm going to wet my pants. I've had diabetes and infections ruled out, so doctors just kind of shrugged their shoulders and told me I'd have to deal with it. I'm now learning that NHP is characterized by urinary incontinence in addition to neurologic symptoms, so I'm wondering if that could be my issue. Let me know if anyone knows of any forums I can go to to ask people for advice getting a doctor to consider NHP if my EEG is normal. I see there's a section on here, which I will post in, but it doesn't look particularly active.

I'll keep you guys up to date on how my EEG turns out.

Hi pearlescent,

I wish you the best of luck with your e.e.g. and to find an Epileptologist just ask your family Dr. to refer you to one and they will be able to get you in quicker under your family Dr. request.
I will let you know that sometimes an e.e.g. will not show any problems and that's because the scar tissue or brain damage is to deep in the brain for the e.e.g. to show. You may have to have an MRI, CT scan, PET and SPECT scan to find out the details. I had all of these tests done before I had brain surgery to reduce my sz. and it only showed scar tissue on the right temporal lobe but when my surgeon cut me open they found brain damage on the frontal lobe and left temporal lobe that not a single showed because it was to deep in the brain.
If you are taking any prescription meds this could be a reason why you are unrinating a lot. I take Diamox and it gets rid of extra fluids in my body which can trigger sz. and so I have to use the restroom a lot. You should check with your pharmacist to be sure.
Cut back on the carbs and starch foods because they will turn into sugar in the body and this can trigger sz. for some people. Also nutra sweet (aspartame) can fire up sz. for many people. I found that out after buying diet soda and having many sz. I was told to stay away from anything with nutra sweet in it.
Good Luck with the e.e.g. and I wish you only the best. May God Bless You!

Sue

Thank you for the good luck wishes. Yes, I have heard that sometimes EEGs don't show seizure activity, which is why I asked if there was anything that could be done to maximize the chances of my sz showing up in the event that I do have them.

I have already had 2 MRIs and a CT scan. They were declared pretty much normal except for a small spot on the MRIs, but they just said it was too tiny to have any significance.

I am not taking any prescription medications. The only "pills" I take are a B-complex supplement and multivitamins. Sometimes I take vitamin D3 as well, but I'm out right now. I've hardly ever been on prescription drugs. I took Prilosec once for like 3 days before saying "Forget this." My cardiologist said maybe my chest pain was heartburn even though I knew it wasn't, so I humored him and took it for a few days, but then I just stopped because it was pointless. I was also on Phentermine for a couple of weeks before I spilled the bottle and never took it again. I did have an antibiotic for a throat infection a few months ago too. Other than that, I haven't been on prescription medication for pretty much my entire life with the exception of antibiotics for throat infections as a child. So I'm pretty confident my issues have nothing to do with medications.

Hi Pearlescent,

I'm very happy to hear that you haven't had to take any medications over the yrs. personally I ask myself if Drs. sometimes over medicate a person just to make money from the drug co. making the drugs they prescribe. You mentioned that you may have had heartburn at one time. I will tell you that it has been proven that some people with heart disorders/problems will end up having sz. in some cases it all depends on how the blood flow is along with a few other things with the heart. I found this out a few yrs. ago so if there are any heart problems be sure to let the Dr. you see know about it. I wish you only the best of luck and May God Bless You!

Sue

Well, I went to the cardiologist for my chest pain, and he did a stress test and an echo. He said they both came back fine, so he just gave me an antacid because he said it was most likely just acid reflux. So I don't know, but at least those two tests said my heart was fine.


I had my EEG a few hours ago. I'm really frustrated because I could not sleep no matter what. I tried so hard, but I pretty much knew going into it that there was no way I would be able to fall asleep in that short a time frame. That's one thing that probably exacerbates my condition; I can never sleep until I get to the point where I'm exhausted to the point of hardly knowing what my name is, basically. So I guess if my issues occur mainly during sleep, they won't see that in the results. Grr.

Something really freaky happened during the hyperventilation part, but I don't know if it was a normal reaction. It started feeling like my entire body was shaking/vibrating, but it wasn't. It was really bizarre and scary. I stopped the heavy breathing after like a minute because I couldn't stand the feeling; then she made me continue after a little while. So she came in the room and asked if I felt like my head was tingling. I told her no, it felt like my whole body was tingling, and she asked if I was having a panic attack. I said I didn't think so. That was really strange and shook me up, though. Not sure if it means anything. It took forever after she left the room to let me sleep for the vibrating/tingling feeling to stop. I feel like I may have been able to sleep had she not had me do that beforehand.

I guess I'll see what my results look like next week.

Hi Pearlescent,

I'm very happy to hear that things are going well with your heart. In regards to the tingling you felt during the e.e.g. I have heard many people say that they get that feeling during or before a sz. so maybe it was good that it happened and it will show on the e.e.g. if there was any spiking in your brain when that happened. Also if you were tired that was good, I've had to have a sleep deprived e.e.g. where I stay up all night and the next day have the e.e.g. and it shows a lot of electrical activity in my brain.
I'm not sure but the tingling you felt could have been a simple partial (aura) sz. starting up. I wish you the best of luck and May God Bless You!

Sue

I was unfortunately not as sleep deprived as I would have liked to have been. I tried to only get in an hour of sleep the night before (they said I could have up to 4 hours), but then I woke up and fell right back to sleep for another 2 hours. I ultimately wasn't able to fall asleep during the test, which I'm very upset about, but I tried the hardest I could to relax and sleep.

It'll be interesting to see if anything showed up when I had that tingling feeling. I kind of think the tech would have told me if there was, but maybe not. I'll find out soon enough.

Thank you for all of your responses!