Hello. I'm new to this site so please bear with me. I've had partial complex seizures (called psychomotor way back) for years now, started for no known reason when I was 10 (no one else in my family has epilepsy, didn't fall hard on my head, etc.). Then about ten years ago, I also started having drop down ones (not the convulsion type, but where I lose consciousness and fall to the ground, then come to). I've had 4 so far, but none for a few years. Tegretol controls them well enough, but they had to increase my dosage to 1000 mg. This affects my being about to get the words out. This is very annoying. But I think the worst things about my epilepsy have been the auras (not the flashing light, smell type sensations), but the type where I feel a lot of strangeness and the weirdest sensation in my brain, as well as an urge to laugh sometimes; it feels very uncomfortable and over the years they now affect my being able to even physiologically speak when I'm having an aura. I've always done a lot of medical research since I find these things very interesting, but a neurologist told me once that there are no medications "that I would ever want to be on" that could make my auras stop. Some days I have a few; other days they seem to occur non-stop. Sometimes they even affect my facial features, particularly my lips on the right side of my face, which sometimes try to move up, as well as my eyes just not looking right. Again, I manage to keep my face under control somehow so others won't notice it, but the older I get, these auras seem to get more powerful every year. These auras are definitely the worst part of my epilepsy and oftentimes make me feel like I'm just going out of my mind. I've always wondered if others have the same problem to contend with. If so, I'd love to hear from you. Thanks.
Last edited by PurpleRose; 02-02-2008 at 12:37 PM.
Your seizures sound so much like the ones I used to have. Especially the auras. My auras would feel like I had butterflies in my stomach and that's how I knew I was going to have a seizure. It sounds like you might have the type of epilepsy that I had, which is called Mesial Temporal Schlerosis and that means your seizures are coming from the temporal lobe. I'm not a neurologist, but my neurologist who is an expert in epilepsy told me that this type of epilepsy has the best outcome to be taken care of by surgery.
It's funny that you mentioned how you laugh, because I used to cry when having a seizure. My Neuro was saying that there is a reason that you have emotion during that time, and that's because your seizure is coming from the emotional part of your brain. So my guess is your seizures are probably in the same area as mine. I had epilepsy surgery and have not had any seizures since then. They removed a scar in my left temporal. Like yourself, my seizures were getting worse as I was geting older. I also was told that there's no drug out there that can completely control these types of seizures. Has your Dr. talked to you at all about surgery? It has saved my life and I certainly hope you can figure out the best way for you to control your seizures. Keep us informed.
Except for so many auras,when I read your post I almost
thought I wrote it myself.I have had seizures for 40 years,
and they have been the complex partials except for the
last 7 or 8 years I have started to have the drop attack
seizures sometimes.Like Krista said she had surgery,
I am about to go in for an evaluation for surgery this coming
My doctor has never told me that I have the mesial temporal
schlerosis,but,they might when I go in for the evaluation and
more tests,they have just always told me that mine is in the
left temporal lobe though.My neuro. has unfortunately just about
given up on controlling mine with medicines,she was the one that
recommended I go in possibly for surgery.
The only thing I've noticed since my surgery is I am a happier person. I had to take anti-depressants before the surgery and now I no longer am on them. Nothing else has changed. My neuro did say it may effect my vision and speech but I didn't have any major complications. I will say that my thought process was very slow right after the surgery and I had a hard time remembering what words I wanted to say, but now that I am healed, that's no longer an issue.
Thanks very much for the info.I already have problems with
finding the right words,my vocabuary was cut in half after
a very bad grandmal and busted my head from the fall.
I am happy to hear that you are much happier now,I was
taken off anti-depressants and have been happier ever since,
my neuro. said,anti-depressants can have the opposite effect
on alot of people with epilepsy.Take care,Sherri
Whew , I have had "auras" for 14 yrs also gmals and now I realize everything else but drop szs. I thought my auras were drug flashbacks and actually enjoyed them at times also thought a lot of what was happening was a panic attack .
It was not true and I know now that heat and and over worked were always links in this .
I just stopped tegretol but still have serious memory probs and the very ???????? uhhhhhh.. finding the right word ! lol....
my neuro acted like this was no big deal this week????? or I was faking .
he also told me that after 3gmals in one day and probably status part of the day that long term memory probs were not an issue?????.
I best describe auras to others as the feeling a person has while coming down from strong hallucagens ,lsd, mushrooms etc..... it is exact perfect and would be very frightening to a "normal" person.
My big trip when any of this happening is noise I mean little stuff ,fans ,buzzers,bells, this computer, motors of all kinds ????taking on a vol.level that is unbearable ,frightening and now kind of feeding itself??? not schizto. type but truly getting worse because the noise the ringing in my ears triggers the aura then the auras make the ringing worse and if I,m recovering from gmals and have a headache I could see this getting to a "panic" state. whew that was a mouthfull..... with depression now I can understand a little of how with people who were not in touch with themselves or drunk or high they would surrender to suicide ,very deep stuff we are talking about here.
I went into "aura" in front of a co worker once and he told them I had a heart attack and was dying??? scared "him" real bad I remember being mad because I could not talk .
I also feel tegretol made me have more auras????? I know heat does .
Can't stand the sound of flourescent lights - was horrible when I could still work. Fortunately, I had my own office, and the lights were minimal (not like a whole station full of them), and my fan helped 'blank out' the buzzing.
My auras aren't annoying in and of themself- they just annoy me that a seizure is starting, and that's upsetting. I do better at home (I live alone), so, just go to safe place (bed, or recliner 'reclined') and ride it out- I don't remember much after the aura, until I wake up, feeling like I've been hit by a bus, and usually a lousy headache).
Whew a lot of imfo. Thanks I never realy have "gave up" because of szs. in fact I just went on with it for yrs. and wow can only say I,m a very tough guy
I was working a lot of hrs ,remodeling, cooking, painting, woodworking, gardening , landscaping, hunting ,fishing, building, and finding a few more hobbies to learn about and teaching a very high I.q. little girl whew.
dealing with someone elses illnesses and not paying attention to my own finally caught up with me and my body started responding with every sz. but a drop sz. and the depression that I knew nothing about and still know little has /is my biggest monster worse than drugs/alcohol ,blood , poverty, almost any thing I can name .
I really do not see how you do the job you do "and do it" I would /will forget
how to do any job dealing with no,s at all . and am now scared to death of power tools my d.d is teaching me basic math skills again this in itself elimanates me from const. work. noise eliminates factorys of all kinds . I don,t drive and have forgot about 10 appointments in past mo,s ,that is makes me so mad at myself that it feeds the depression and brings on auras that ????? do most of the stuff that has been said. I do feel lucky because I do not get bad headaches as some do .
I just wish I had known yrs ago what an aura was. because a journal then would have tripped a doc. up. it was ???? many times a day, week .
actually I do see a top neuro but they have so little time that they almost lol when I show them a list of probs. I still do not understand how 3gals in one day and partials all week is not "real" bad. thanks Rick
My complex partial siezures focus is in my left temporal lobe. All of my seizures are always preceded by an aura. When younger these auras were extremely fightening. Nausea, almost to the point of vomiting, and the feeling of being pulled under. The sensation is best described as the feeling that life is being withdrawn from me. Over my 50 years of siezures, I feel I have experienced a thousand deaths. But as I have grown more accustomed to these sensations, I try to relax and let it pass. Many times this relaxing technique results in the passing of the siezure itself.
I am undergoing tests for left temporal lobe surgery. To be free of this curse would be heaven in itself.
We are a strong group of people. We all share the strength necessary to "grab the bull by the horns and wrestle it to the ground". Never loose hope.
I am fairly newly diagnosed (I had my first Grand Mal last year) however, I have had absences all my life. I may not be able to help you other than let you know that I experience the same strange feelings that you get. I am on a mission at the moment to get to the bottom of it....I am on Tegretol also. Do you think it could be the meds? I find that I have strange feelings in my head sometimes - not dizziness as such, it almost feels like my brain is on go slow and yes, I have had times where it felt like it was an effort to speak.
If I find anything out from my side I will let you know. I just wanted you to know that you're not alone with these sensations that you are having. I know how debilitating they can be.
hi sherri and nervous and purpulrose and whoever i missed hows everyone thought id stop in and say hi i still have my seizures but they are thinking its EP now whats the difference between a seizure and a confalsion thats not how you spell it but i cry with my seizures everytime and i also screem and moan and i allways shake and have the drop ones im seeing a specialist as soon as they call me for appt my neuro i see now wont change the depakote er im on and i hate them they make me sleep too much and i been on them since dec 07 to aug 08 so far at times i dont take them like im suppose too cause of the sleepiness but then i have seizures so i go back on them and every test i have had are all normal but my reg dr allways says i need a psychiatrist and im so sick of them saying that its not that its my seizures if i can only get on the right med or surgery even but they'd have to find out where in the brain first wouldnt they ??
glad to see you here sherri and nervous .
I have suffered from simple partial seizures for almost 12 of my 23 years of life and let me tell you, Iím tired of them. (Tired/angry/ect) They are very sporadic and usually revolve around my Ďcalendarí. I get very emotional ever time which usually leaves me quietly crying and moaning while I fall asleep on the couch. I have them at work (as some of my triggers are computers and fax machines) and it doesnít help that I work in an office. Itís very hard for people to understand and is very frustrating because we all have a schedule and our seizures have no schedule. They will happen no matter if youíre at work, driving, at the grocery store ect. I sympathize with you all because this is the closest that I have come to meeting someone who experiences this Ďgiftí that has been granted to us. Is feels good to know that Iím not alone in regards to my own feelings that I have towards my seizures.
Take Care, Jules
Time does not heal. It simply provides distraction.