I hope someone can help me with this. I have been having these "episodes" for years which seem to resemble the descriptions I have read for simple partial seizures. Only recently did I find out that they aren't normal. I have been to an epileptologist (sp?) at the Cleveland Clinic and have had two EEGs; both have been normal but they were both brief and I don't normally have these when I am lying still. They occur when I am up and around.
Here's what happens: I get this funky intense feeling in my head and belly which I always know will lead to something. Sometimes the rest follows; sometimes not. Then the feeling intensifies further and my vision usually blurs and I stare. It's not that I can't move around but I just don't desire to while it is going on. Sometimes it feels like my muscles relax and often my hands relax the most. But I am aware during the whole thing and can speak during them but I am too distracted to have a conversation. Then it passes and I go on with my day. Sometimes afterward I am a bit disoriented but it clears quickly.
The doctor has suggested that they might be originating in the temporal lobe. I have an MRI scheduled for November. In the meantime I am not allowed to drive which has thrown a huge wrench into my existence!
If anyone else has this or something similar, I'd be grateful to hear from you. Please feel free to email me directly, but only if you can help.
Thanks so much!
[This message has been edited by YogaMom (edited 10-11-2002).]
[This message has been edited by mod~6 (edited 10-16-2002).]
[As per the Posting Policy, please do not post any personel contact information. ]
[This message has been edited by mod~6 (edited 10-16-2002).]
I have temporal lobe epilepsy,the eeg showed activity in the left lobe,but the neuro said it's probably both.Anyway a typical episode for me generally starts with a feeling of dejavu,or a word or sound or due to lighting,I then feel sick and I go dizzy.I generally sit down or lay down,and hold my left arm because It hurts.The sick feeling is indescribable and I wouldn't wish It on anybody.I was put on tegretol but it made me ill,so now I take lamictal and It Is a god send.I couldn't have an mri because I have a piece of metal in one eye,but I had a cat scan,this showed nothing.
Thanks for the response. Are you aware during the seizure? I am trying to figure out if what I am having are really seizures. Do you know any more about temporal lobe seizures? It seems like one person's seizure even in the same area of the brain can have completely different symptoms from someone else's. Have you ever heard of someone having blurry vision during one?
Yes sometimes I am aware of whats going on.I also get blurry vision,sometimes when out walking in town.When It happens it's as if I am not there but looking through someone elses eyes.Sounds daft I know,but I can carry on walking until It goes.It also seems to happen when I am concentrating on something with my eyes.I sometimes get a twitch in my eye,usually my right,and also my right corner of my mouth.They are called partial siezure because they affect only part of the brain.Temporal lobes are involved in the formation of memory,and the appreciation of smells and taste.Occipital lobe is involved with vision.Parietal lobe is involved with the appreciation of sensations.And Frontal lobe,among other things is involved with the control of movement.So I suppose,many of us could have times when different parts of the brain are involved..together or alone.My neuro said the eeg picked up my left temporal lobe,but my right is probably involved.They can't find anything physical,So he asked loads of questions,about when they started,what am I doing when they come,If anyone else in the family has epilepsy etc.Well my sister has grand-mals,so that sort of made his diagnosis easier.He said they don't diagnose epilepsy unless you have more than one siezure.Hope this helps.
Thanks so much for your help. What you have said has been very helpful. I also can walk or continue moving during one but usually I only do if I am in a situation where someone is around. It's almost an irritation to try to concentrate on continuing what I am doing and it's much easier to just hang out until it passes. Your other symptoms sound much mmore annoying than mine. How did yours start? Mild and then get worse or have they always been the same? How old were you when you were diagnosed?
I used to only have these once in a blue moon and so I didn't even know they weren't normal. But this summer they increased in frequency and I have had some other weird things happen so I am having them checked out. Before when I thought it was normal to "space out" like that, they didn't bother me. Now that the doc has said no driving and they've increased, I'm more nervous about the whole thing. And my husband watches me like a hawk whenever he sees me just sitting. Makes me self-conscious even though I know he's just concerned.
How interesting that your sister has seizures also. My sister has said she has these weird times when she sees a strange blackness and her daughter has said the same. Maybe I'd better direct her to see a doctor.
Thanks again!!! I was grateful to find this board.
I was about 8 when they first started.My parents didn't take much notice of me,and I like you thought It was normal.They have more or less been the same up until about 99,then I started having more of them,maybe 2 or 3 a month.The dizzy feeling got worse and I felt like I was slipping into unconciousness.when they first got worse I can remember my wife shouting me for dinner,and I was just slumped against the wall and I couldn't answer her.Anyway I was 45 when eventually diagnosed.I was under a lot of stress in 99 so It was probably that which made the siezures worse.My sister has It worse than me,but she's happily married and now lives at your side of the pond in Atlanta.
How neat that your sister lives in Atlanta. Wow, you were 8 and weren't diagnosed until you were 45? I can't remember when these "episodes" started. I just remember having them as long as I can remember. I am 37 now. I guess I thought I would have been diagnosed a long time ago if there really was a problem that needed attention.
I am going to ask you some strange questions. Please feel free to decline to answer them! Have you read a book called "Seized"? It's about TLE and I was wondering if you happen to have any of the other sort of odd stuff, like creativity or tendency to write alot, or are the features on one side of your face slightly smaller than the other side? They also mention some personality traits. Parts of the book seemed eerily familiar.
Again, thanks for answering my posts. I have three weeks until my MRI. Luckliy we have an excellent facility here with an adult epilepsy center and my doctor has published reams about epilepsy.
I have been diagonosed with epilepsy for 2 years. i am also a type 1 diabetic for 23 years it took me a long time to get help because the doctors said it was a low blood sugar effect...symptoms are close blurred vision a feeling a confused feeling abnormal speech walking aimlessly...i was finally diagnosed with a eeg afer a grandmal which noone could explain ...i think my body was tired of being ignored but i still suffer from both types of seizures even on meds but at least i know what they are....
"Grant me the courage to change the things i can"
Thanks for your reply. I also can tend to have low blood sugar because I am hypothyroid. (My mom is diabetic.) So I have had those "low" symptoms and a couple of times nearly passing out before I was diagnosed and medicated. Anyhow, these episodes are different and distinct.
What were your seizures like before the grand mal seizure? Could you describe a typical partial seizure?
To be honest,I did once read a book about epilepsy,when I was first diagnosed,but my memory Is that bad I can't remember what It was called.I remember the cover was a mosaic of the ladies face.(the lady who wrote It),and I think she was something to do with either Oxford or Cambridge,uni!,or maybe I'm totally wrong but she was very explicit about her siezures,you know like her husband would have to clean her up after siezures in bed,where she would urinate etc.As for creativity,I like to sketch with charcoal,and pastels,especially at the coast when I manage to get there.It depends on whether I feel up to mixing with people.I don't get on with anybody really.My job (before I was finished),was very good because I could work on my own and I did a lot of night shifts,even at weekends,so I didn't have to talk to anybody.I was a maintenance engineer,but I was very good at designing so I was given projects and left alone to get on with them.The engineer was sorry to see me go but It wasn't safe for me there anymore,because I had to climb cranes and work in lathes etc.I had done the same job for 29 years,and after diagnosed,I was history within 2 weeks.By the way,I went to the docs a few months ago with a sore throat and swollen glands!,I have had this sore throat for months,and had also been lethargic and generally lost interest in day to day activities.I had a blood test and after 3 days a letter came telling me I had an underactive thyroid,due to my autoimune system destroying my thyroid,my doc say's they don't know why the body does this but It will eventually destroy my thyroid,so now I take thyroxine and have constant blood tests for life!sucks eh?.
How interesting that you have a low thyroid! I have read that the docs in Britain are much more in tune with thyroid imbalances than our docs here. Did you know that thyroxine only has t4 and some people actually need t3 as well to function at their best? (according to an article in the New England Journal of Medicine, a highly reputable medical journal here).Especially with problems like memory, confusion, concentration, depression, etc. So I take Armour which has both. Cytomel is a t3-only drug that can be taken with thyroxine, a t4-only drug. (Supposedly a large number of people with TLE are left-handed, have autoimmune disorders and hormones imbalances and are very creative. Thyroid is an autoimmune disorder and a hormone imbalance. I am all three, creative and some other things, too, which is a little unsettling.)
I am sorry you cannot continue to be an engineer. It's not much fun, I agree, but I take great solace in knowing that God is in control of my life so He must have a plan for me. I am able to work but only part-time which may have to change because my husband was laid off yesterday. I hope you don't mind the religious tone, it's what gets me through. That and that as you say, it could always be worse!
Maybe reading this book called "Seized" would interest you. It's enlightening and a good read. It's by Eve LaPlante. It doesn't sound like the one you described.