For me, it's a weird feeling in my chest- not pain, but a familiar "uh oh" sort of feeling and a spacey feeling in my head- a "good one" lasts 3-5 minutes- enough time go to the bathroom, lie down, and possibly get my 'as needed' seizure meds (Klonopin and Inderal) if I think about it--usually not thinking too clearly by then...a "bad one" is 2-3 minutes, and just enough time to go lie down- or maybe call for help if it's following another seizure too soon.
If I wake up from one seizure, and feel another aura, I usually feel like I'm at risk for non-convulsive status- but I've been known to frequently be on the floor, out cold when EMS gets there, so I don't know how "non-convulsive" it is- something knocks me out cold, and being alone, it scares me to not have anyone around, so with the 911 system set up to show my address and name, I can get out "need help- seizures", and if I'm having a strong enough second aura before waking up completely from the last seizure, can call for help...but I hate doing that- but all seizure recommendations say to not risk more seizures IF there's no complete 'recovery' from a first one . If I have just one, I stay home, and sleep it off , get a headache, and feel like I've been run over by a bus.
What's it like for you guys-- do you get auras? What are they like? How long do you have between the aura and the beginning of not remembering anything?
I don't have GMs either, that I know of - People who have seen the CPS say I 'chew', blink, and have mouth tremors, and sometimes my left arm shakes. At night, I'm not sure what goes on, other than waking up with a chewed up tongue, and inside of my right cheek, achy, and worn out. And sometimes incontinent. I had one GM during a party when I was 16, and my temp went way up, but don't know if the temp went up because of the GM, or the GM increased my temp...
Hi all. Just want to thank people on this forum for the opportunity to share my wife and mine expereinces. We have been going to doctors now for three and a half years and they just seem to shrug. Maybe some of you have similar symptoms.
Three and a half years ago, after having three hard ciders THE NIGHT BEFORE my wife woke late to go the bathroom and collapsed on the kitchen floor. She was with it enough to call me for help. When I got to her I helped her to the toilet thinking she had stomach sickness. Once in the bathroom, she had a seizure. Her eyes were open but she was wasn't responding. Her jaw was shaking and some arms movement. It didn't last more than a minute or two. I called ambulance and gave her a glass of water which seemed to snap her out of it. The hospital said she probably had a virus and that she was very dehydrated.
Nothing happened for a few months when she began to expereince auras. She would get these at night, the second she drifted off to sleep. She knows who I am, but says things that make no sense at all. These last about a minute or two, sometimes less, and somtimes she can talk to me and make mild sense while having them. She had MRI's CAT scans and EEG's. Nothing. They started happening every few months or the night after having a glass of wine (She maybe had a few glasses per weekend). We got excited and thought that maybe she was having a wine allergy, and she stopped drinking it. For a few months, it stopped, but came back regardless. We then notcied that she would get them the night after eating anything with sulfites in it. We cut back on almost all sulfites but they continued happening every 6-8 weeks. They were so bad. She just talked silly for a few seconds and that was it other than feeling tired for the rest of the day. Also, she would get them throughout the day, for maybe eight hours, but they would happen every hour to the second almost.
Summer 2005, they began to happen every month like clock work on the same day. She fell asleep one night and ha dan aura. Becoming pros now, we knew she would wake the next day and have her standard string of auras. She went to work, had an important presentation, and the middle of it, had a grand mal seizure. I wasn't there to witness it, but it was pretty typical from what we understand. The doctors wanted to put her on Keppra, but my wife and I were skepitcal. We felt she had more of a metabolic thing going on then a seizure disorder. We didn't take the medicine, and the auras continued happening every month around the same time (not with her period) and they even seemed less intense...Until yesterday morning.
The night before last, she had an aura before falling asleep so we knew she would have a day of them the next morning. She had a presentation again, but was going to take the day off. When she woke, she had a smal laura and then minutes later had another grand mal seizure in bed. I called the ambulance. She was with it enough to tal to me by the time we got to the hospital. So now today we have started our first dose of Keppra. We still aren't convinced that it is Epilepsy and not some metabolic thing.
Has anyone heard of something like this? If she has a mouthful of wine, she will get an aura either that night of the night after. Also before she had the first seizure, she had once taken a calcium pill and expereinced an aura. We also feel like having auras for an entire day every hour, once a month is not typical, and might be a symptom of something metabolic.
Sorry to ramble, but we are very frustrated. Again, thanks for the chance to share.
I have had GM's too. Only 6 total. I mentioned this before... they were caused by lack of oxygen... at least that's what the doctors said. I have sleep apnea. If I sleep on my back, I tend to stop breathing. I either wake up having a hard time breathing, or after a GM. Somnoplasty and tonsils out in July should correct it.
Oh, yes, I forgot. The doctor also mentioned sleep apnea. She snores terribly, often sounds obstructed. Her father and sister have it. Is it a real possibility for seizures?
What type of aura (which is really a simple partial seizure preceding another type of seizure) does she have? It sounds that if she's had more than one grand mal, she could be epileptic....have you guys seen any docs who will do a metabolic work up, to be sure that's not going on either primarily, or in addition to seizures? IF the Keppra helps, that will be a big clue.
My seizures don't have any rhyme or reason to them- some things make them worse, and sometimes, a bladder infection is going on, and the seizure is the first clue- otherwise, temperature control, not sleeping enough, and my period - if other things are going on- can trigger seizures, but not necessarily....sometimes they just happen.
Thanks both of you. We are going to doctors tomorrow, and I will request metabolic work up. I guess I am not too sure what constitutes a GM, but she has had three so far in almost 4 years. When the auras occur she just sort of spaces out for thirty seconds, but like I said, it occurs throught the day every few hours or so. The 3 GM's she has had two have occurred while waking up, and one while she was presenting, but had also had some supposed sulfite-free wine which turned out to have natural sulfites.
So I am starting to wonder if all these weird feeling and sensation that I have been feeling, and feeling like I'm just "off" are in fact seizures themselves? I will have then through out a day or two and then for about 2 or 3 days afterwards I'm just exhausted. Today I had a very bad day and just felt weird and off all day long. I still feel a little funny. I wish my vocab was better so that I could describe it to you guys but they are such odd feelings they are difficult to put into words. So could these feelings be a form of seizures? Or am I going crazy!?!?!?
There are some similarities between anxiety and the auras my wife has. I think the key is not to stress or freak yourself out. Chances are you could be given yourself anxiety, which raises your alertness and panic mode which will give you the feeling of an oncoming seizure.
Aside from feeling "out of it" for a minute, she also gets cold and then shivers for about thirty seconds. Sometimes during her monthly bout, she will just get shivers without much in terms of the mental lapse. Again, these always start at night and then linger into the next day every hour or so. Neither us, or her first few doctors (we've been through a few now) even suggested she was having seizures based on these monthly to-bimonthly symptoms. It wasn't until the first GM that we or doctors began calling them seizures. We also just learned today that her grandmother had seizures during a certain time in her life. So I guess it's hereditary too. We have been living a super stressful life of travelling and working. My guess is that this doesn't help her propenisity for them either.
Has anyone heard of high stress triggering seizures?
I didn't know I was experiencing auras until I described what was going on to my neuro and he chastised me for not calling him. I keep a journal--as everyone should, I hear--of any 'weirdness' going on, print out a copy for myself and the doc and present it to him at every appt.
Anyway, my 'auras' consist of hearing doors slamming, gunshots, someone yelling my name, music, televisions blaring, etc.
I get the visual weirdness, as well, mostly if a streetlight is about to burn out and is flickering. I'll see a dark figure approach me from the woods, or bright flashes of color.
And I always get a strange feeling in the pit of my stomach then nausea.
All of the above-mentioned is followed by a period of staring off into space.
Needless to say, when I told this to my neuro. the meds dosage went up considerably.
Absolutely, stress lowers seizure threshholds, and the fight or flight of anxiety is a form of stress on the body....anything that isn't "the norm' for a person can be a seizure trigger, but usually people begin to figure out their own, as they get more used to what's going on ahead of time (or someone tells them).
I'm SO glad that "pseudo-seizures" is becomming a term of the past, and non-epileptic seizures is the new preferred term, since there IS a seizure, but the primary cause isn't abnormal electrical brain activity (that's secondary) and the main cause can be something very real and very biological, like the hypoxia from sleep apnea, or various metabolic disorders- although threre are so many of them, that it would be difficult to pin them down, or get insurance to pay for all of the testing. And, someone can have both NES and seizure disorder- not an all or none thing....
I'm also wondering if I'm not having more simple partials during the day than I originally thought, since I'm having some weird ear ringing, vague dizziness or "not right' feeling, that doesn't progress to anything else, etc.... gotta keep better records than "sz- EMS here".... of course, I fired my neuro since she won't take payments, and has been uncool about not informing me in enough time to 'save up' to see her before my Carbatrol ran out- I called like I was supposed to do, and had done 3 times before, and the last time it was 'she won't refil that without seeing you" (understand needing to have the exam- just needed some time to save the money to go-- I'm on patient assistance for meds, think that'd cross someone's mind..... )....this 2 weeks before I was going to be out of the meds....no notice at all....didn't care that I was Medicaid pending, and wouldn't see me until approved and had an ID number. so scr*w her. I'm moving soon, and will get the office partner of the neuro I saw there (mine died of ALS)...the records should still be there after only 3 1/2 years.
(Has anyone heard of high stress triggering seizures)
In my case, YES!
My first GM seizure happened because I had moved from a quiet rural town to a neighborhood near downtown Las Vegas, NV. Also, I was now living with a new girlfriend who had lived there for quite a while. She was used to the crime and noises of the Big City... I wasn't. Needless to say, I had a seizure. As soon as the doctor said I was OK to live alone, I moved back to the rural town again. I didn't have another GM for exactly 5 years. Then when my sleep apnea had gotten bad enough, I had another, then another... until I forced myself to sleep on my stomach.
Also, I have this odd thing happen when I am not thinking about it. At night while driving down a street with streetlights on, more often than not, a light or two go out completely. I'm not just thinking this, people with me see it too. I wonder if this has anything to do with having seizures?
Thanks, your story gives me some hope that my wife's past two GM's in four years are avoidable. Thanks for sharing.
I want to see if I might be having these too. My first seziure was a grand mal that started about 4 years ago. After that I only had focal seziues with very few grand mals. After the doctor has worked through my meds I've been doing pretty good. But what is happening now is what sounds like what you are describing as auras.
I kind of get a dizziness in my head, I know what I'm doing and don't space out and forget things like I do when I have a focal. Things just sometimes don't look right in a room, and sometimes I will smell something that isn't there. I just kind of go out of it for a few minutes and then I'm fine. I don't get the headaches like I do or get tired like I do when I have a focal. I really don't know how to describe exactally what is going on and I don't call the dr to let them know that I have had a sez because I don't know if I am having one. I spend most of the day alone so when this does happen I could be going into a focal, but like I mentioned before I don't have the after effects that I usually have when I have had a focal. I've had this happen when people are with me and they have asked if I am ok and I think that I am, but after reading this I'm not sure.
Does this sound like I am having an aura and is this an actual type of sez or is this just something that happenes that could lead into a sez but you don't go fully into it.
Any answers would help alot because I've been through it all and would love to make everything finally stop, so thank you in advance to anyone that would have any advice!
I'll try that tomorrow. My mom and I are spending the day together having a "beauty day" as we call it. We are getting our nails done and a hair cut, and who knows what else we may be doing. I always have my med info with me and everyone in the family has a printed out list that way if anything would happen everything is there at hand and we don't have to worry about finding things. I'll mention to her to pay attention to me and I'll let her know if I feel weird. Thanks for the info!
It's hard to describe an aura. Doctors have asked me, my mom used to ask me...it's kind of like describing a color to a blind person. I'll try, though. I was born with TLE, and I'm in my mid-fifties now. I guess I've had four or five hundred grand mals in my life.
My aura involves my ears. They flash red hot, and then turn icy cold. I hear a huge HUMMMMMM. I don't get enough time to get down, I only get about 5 seconds' warning. When I'm coming around a minute or two later, my ears are still involved - they feel wet like someone is pouring cold water over them. The sound has switched from humming to a very busy choir sound. Choirs of angels. I frequently wonder if I've just woken up in Heaven.
Then invariably someone is shouting my name over and over, and I HATE that. Something about my name being shouted into the chorus, scares me to death. Somebody wants to know who the president is and where we are...the choir sound is breaking up, I'm becoming aware that I'm laying on a cold, hard floor and that I don't care who the pres is right then.
For two days after, I'm exhausted, confused, I smell hot copper (is that residual fried-brain smell?, I'm depressed, and I'm hypergraphic.I HAVE to write page after page after page of jibberish. I've only just learned this is a common trait in epileptics. Who knew?
I despise the side effects of dilantin/phenobarb - I was willing to try every new one that came out, but mostly the cure was worse than the disease and I would go unmedicated for long periods of time. Trileptal was my miracle drug - on it for ? 3 or so years, no side effects, no siezures.
Every tooth in my mouth has been crowned, inlaid, outlaid, bridged, capped, filled or rebuilt, because of people sticking hard things in my mouth. I've bitten a few people quite deeply. Let's all help educate the public that it is impossible for a person in siezure to "swallow their tongue", and the thing to do is roll the victim to their side for the duration of the siezure. Don't put stuff in the mouth, especially not fingers.