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'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.
Well, none of the symptoms described are suggestive of a seizure disorder. If the EEG taken in a few days after an episode was normal, the possibility is highly unlikely. Other possible causes that may need to be considered include stress/ anxiety, sleep disorders, OSA, opthalmic causes, micronutrient deficiencies, neuro-psychiatric causes etc.I would suggest discussing the situation in detail with your treating neurologist. After a specific cause is diagnosed, it can be managed accordingly.
Hope this is helpful.
Really? None of those symptoms are suggestive of a seizure disorder? I don't have time to search for resources I've read that have explained how every single one of those issues could be seizure-related, as I'm in a rush. However, for now, here is a post in which an individual diagnosed with seizures explains how she gets the burn smell. http://www.coping-with-epilepsy.com/forums/f23/burn-smell-aura-persists-all-day-how-many-sps-have-same-8512/
I will find more and more credible resources next week when I have more time. It really irks me when MDs dismiss my concerns, which are informed by research, with misinformation themselves.
If I were you, I would post your questions regarding epilepsy on the epilepsy forum vs. neurology. Neurology covers everything, it's almost too broad.
Seizures are different for everyone, even if they occur roughly the same area of the brain, for example. I don't intend to "diagnose," but what concerns me are your statement numbers one and five. There are many different types of seizures (I explain briefly below) but I wonder if you might have what are called simple partial seizures, possibly arising from the temporal lobe on your left side. Simple partial seizures do not cause loss of consciousness, but can involve sensing something that isn't really there, like your smell of burning rubber, which is common for left temporal lobe simple partial seizures. Your odd sense of things being kind of out of proportion (if I am correct) is also suspicious, and sounds like something arising from the temporal lobe. Do you get kind of like an "Alice in Wonderland" sensation when you feel like this, where familiar things seem bigger than they really are, or just strange or foreign? Your other symptoms do not sound epilepsy related. They might be in relation to something else, though.
Briefly (and broadly speaking), seizures are categorized as either generalized or partial. I.e. starting all over the brain simultaneously--a generalized seizure--or starting in one area, a partial seizure. If the seizure activity involves one small area in the brain--enough to cause odd sensations or loss of motor control, but not broad enough to cause loss of consciousness--these are called simple partial seizures. Complex partial seizures involve enough of the brain to cause odd sensations and loss of consciousness. Sometimes seizure activity can spread to the entire brain, called a secondary generalized seizure. There are over 30 specific types of seizures, too much to describe here, of course.
I had refractory epilepsy for 13 yrs, caused initially by a brain tumor. Had complex partial and secondary generalized seizures, quite often. Brain surgery was the only way for me to get my seizures under control, although I will continue medication indefinitely. Although I am not a doc and cannot give you a "diagnosis," of course, I have a hell of a lot of first hand experience and know many people whose lives are affected by epilepsy.
Don't forget to post on the epilepsy community website. I think you perhaps should see an epileptologist (a neurologist who specializes in epilepsy) to discuss your case. Got nothing to lose. An EEG does not necessarily guarantee correct diagnosis, as epileptic activity (i.e. seizure activity) is not occurring in the brain 24/7. Correct diagnosis is based more on your description of your symptoms firsthand to your doc.
You know, I didn't even realize we had an epilepsy forum on this site. My apologies; I will post my new question about my experience during my EEG on there!
It's all very confusing to me because the burning smell, for example, hasn't happened again in around two to three years. The first time it happened, I stepped outside of my school's library, and all of a sudden, BAM, it smelled like something was on fire. I didn't think anything of it at first. I just figured maybe someone is burning some wood in the area. Then it happened again on the drive home. It only lasted a few seconds each time. Then I had that episode where I woke up one day and ran into the hallway because I thought the house was on fire. I was also randomly smelling a more chemically smell off and on around that time, but it didn't alarm me as much because it wasn't as potent as the burning smell. Another thing that happened a few times was that I would be sitting in a parked car and slam on the breaks because all of a sudden, it would look like the car was moving.
All of that seemed to stop after a couple of years of it happening, however, and I don't know if it'll ever happen again. Makes me feel like I'm going crazy since it just kind of stopped, though.
As for an Alice in Wonderland type of experience, I don't think I've ever experienced things appearing bigger around me. Everything just appears slower, my hearing is muffled, and I feel like I'm in a daze. Sometimes when I'm exercising and abruptly stop, it appears like everything around me is waving around in a sort of ripple fashion, though, which is pretty trippy. Not sure if that could be seizure related since it doesn't come on suddenly and is directly tied to abruptly stopping exercise. It stops after 2 or 3 minutes. Also, certain busy wallpaper patterns can make me feel like my eyes are going to burst out of my head, and the wall begins to look like it's expanding and moving in toward me too if I look at it long enough. I know I sound like a crazy person, which is probably why so many doctors told me my symptoms were just all psychological. I'm not saying they aren't right, but I find that extremely hard to believe. I had no major psychological issues when I started experiencing neurological problems (before the seizure-like episodes started, I lost my sense of smell and began having dizzy spells and episodes of blurred vision and severe eye pain). Of course I'm pretty depressed now because it has been almost a decade of no answers, but I wasn't always.
When I had my MRIs, there was a tiny spot that showed up on the left side of my brain, but it wasn't in the left temporal lobe. The radiologist report says it is in the "posterior aspect of the left frontal cortex." Two neurologists as well as the radiologist who reviewed both of my MRIs said that it's too small to have any significance, though. It does make me wonder if it's really "nothing," though since a friend's mom has a small spot on her brain too and suffers seizures. The difference with her is that hers are tonic clonic, so there's no doubt in anyone's mind that she has seizures.
Anyway, I had my EEG today. I'm really frustrated that I wasn't able to fall asleep during it. I tried really hard, but I just couldn't. For one, I have issues with sleep anyway; my sleep is very inconsistent because I am unable to fall asleep until I am well past the point of extreme exhaustion. For two, I was really shaken up by how I reacted to the hyperventilation portion directly before the technician told me to sleep. After maybe 30 seconds, it began to feel as though all of my muscles were tensing up and as if my whole body was shaking/tingling. It wasn't shaking, though, I just felt like it was. It was bizarre and scary. I'm not sure if it was a normal reaction or not, but it took me a long time to be able to relax after that because it took several minutes for the tingling sensation to stop. I'm going to post in the epilepsy forum later on and ask if anyone knows whether that was a normal reaction or not. I didn't seem to have any issues with the strobe lighting.
Thank you for sharing your input and experiences with me and letting me know we have an epilepsy forum! I fully understand that you are not trying to dish out a diagnosis. It is nice to hear input from others who are educated on the subject, however, since I haven't found an MD who is willing to spend more than a few minutes with me yet! I have heard that epileptologists are a good idea to look into. I will have to see if we have any in the area. My biggest issue would be getting a referral to one since my doctors all just look at me like I'm crazy when I tell them I'm concerned I might have seizure activity. Argh.
Thank you! I'm going to go check it out now. Sorry I'm just getting on here now. I wound up sleeping all dang day ( from 2 a.m. until 5 pm); I think the EEG made me sick, but I don't know.
For anyone else who may be reading, I realized I made an error in my last post before this one. I said that one of the first symptoms I had was that I lost my sense of smell. I meant my sense of taste. I wish you could edit posts on here.
For anyone who may be interested in the results, the doctor said my EEG came back "completely normal" and then proceeded to try to convince me that my issues were all related to depression for about 20 minutes. I tried to explain to him why I strongly don't think they are about 12 different ways, but everything I said went in one ear and out the other. He said he would give me a medication to help with the attention span issues I have and then wrote me a prescription for a depression medication instead right after I got done telling him I was not interested in taking depression medication.
So I essentially fired him as a doctor, and I've given up for now. All these doctors are doing is taking my money, which I do not have a lot of, and making the situation more stressful than it already is because of course people in my life are going to believe a doctor who says I'm just a mental case over me, so now they all think I'm just a hypochondriacal lunatic too.
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