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Date: 3/22/2004 11:12:00 PM
From Authorid: 7830
I used to work for a company who cared for several people with epilepsy and none of them had any warning of seizures, they would just hit.  |
Date: 3/23/2004 12:52:00 AM
From Authorid: 10344
I hope you are ok.....maybe this can help some I saw a special not to long ago where they can train dogs to sense epileptic siezures in patients. This man had a dog that would let the man know when one was comming on so he could sit down so he wouldn't fall. Then the dog would pull an alarm that would notify emegency services. I also saw a story where a young girl had a dog with the same training. Pretty cool.......maybe you could check into it.  |
Date: 3/23/2004 2:02:00 AM
From Authorid: 11097
I know of a neighbor who has had this for a long time and she is doing pretty good now. At first she had a problem with heights, she claimed something about the balance would effect her. She would not go upstairs or on multiple levels of her home, but with time she began again. And I know she was also warned about driving, and how to be safe. I know she is on medication now, and she is doing well. I am so sorry to hear this ((hugs)) I am here for you always and you will be in my thoughts and prayers! God Bless you always, much love  |
Date: 3/23/2004 3:07:00 AM
From Authorid: 57640
Well my dad has epelisy(sp) and whenever he has him or is about to you can see this look on his face, his eyes get big, he looks confused like he doesn't know what going on.. then before you know it he has a seizure. I hope this helps. If you need more info, i could ask my dad. :) ((((sportyhugs))))  |
Date: 3/23/2004 5:47:00 AM
From Authorid: 15228
I have complex partial seizures and have had status grand mals..not a whole lot of fun. They started when I was pregnant at the age of 34. The first medication I was put on was dilantin which made me a zombie and anorexic--I lost something like 30 pounds. I was on that for 2 years before they put me on a newer drug, Keppra, which is wonderful. I don't have to have my liver monitered or drug levels checked constantly. You'll find that almost any of the older epilepsy medications will come with side-effects. Most epileptics switch medications at least once before they find one that works and doesn't effect them to badly. What kind of seizures have you been diagnosed with? What are your symptoms? I usually would begin with a De Javu type feeling..than I would wonder across the room, drop into a sitting position, place my head in my hands and black out...sometimes I would dream and I would always feel really sick to my stomach. These would last from 2-5 minutes..I had one while I was driving once, I somehow made it to the side of the road. Even though I never had my license taken from me, I quit driving for 6 months until I knew the medication was going to work. After finding out I had epilepsy It took about 2 years to come to terms with it...now I hardly ever think about it and once a month around the time of my period I will have short partial seizures as I drift off to sleep. I consider myself very lucky because complex partials are the hardest seizures to control. If you want to talk or ask questions just message me or respond here. I KNOW what you are going through!!!  |
Date: 3/23/2004 7:23:00 AM ( From Author )
From Authorid: 11211
Thank you guys....like I said, it's all new to me. Over a year ago I had one, and I've been on Neurontin ever since. Then about 2 weeks ago I had the first one, which was followed by a second one a few days later. This one really hurt me, because when I went down this time I fell across the phone table. Thankfully no bones were broken, but the bruises and pain that followed was horrible. I'm still black and blue from that one a week ago. I'm now taking a second new medicine called Epilim...2 a day. They are slow release and I still take the other one...Neurontin 3 times a day. So far Kelly, no major side affects....none that is too bad to live with anyway. I started out on Dilantin and oh my....it was horrible....I was the zombie like you said you were....I didn't stay on that one long...but the Neurontin worked well until recently....but they tell me that I need extra now, because it's not working alone anymore. To be honest I was hoping that the one seizure I had a year ago was just a one time thing.....that it really wasn't epileptic.....but there's no getting round it now....I have to face it and accept it. I don't drive now at all.....I wouldn't chance it for anything....because I have NO warning what so ever when it hits me....I have no odd feeling...absoutely nothing to warn me, and my husband was with me both times and he saw no sign when it struck. Needless to say....it frightened him to no end....he knew what it was....but he said the sight of it was horrific for him to endure. I don't know what the name of them is Kelly....all the doctors tell me is that I'm having major seizures....the worse....or at least that's all I can remember. If they have named them, I just can't remember. You know how it is...they tell you more in 10 minutes than you could concentrate on and comprehend in an hour. That's why I wanted to talk to you all here.....to hear from others in simple plain english, easy to understand. I haven't searched on the net yet....because to be honest, it frightens me at what I might find. Silly I know....but it's just such a shock at first, and you have to have time to accept it I guess....well I've had to anyway. I will try to find out more about the dog....that truly is amazing....Thank you for all your help and information....this is a start for me...and I appreciate your kindness and help getting me on the right tract with this....love to each of you....  |
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Date: 3/23/2004 7:56:00 AM
From Authorid: 15228
It sounds like you are having tonic clonic (new word for Grand Mals) seizures. Neurologists don't speak our laungage, heck, I don't think they are even from the same planet! I suppose you've had all the usual testing? The catscans, mri's and eeg's? I remember arguing with one neuro for 30 minutes over when I had deja vu..he insisted I couldn't possibly have the deja vu BEFORE the seizure..since I'm the one who has the darn things I know I do!! Grrrr!...but he is the one who put me on the Keppra which I'm very grateful for. Might be a good idea to make a list of question you want to ask before you visit the doctor, take someone with you and have them write down the answers..Remember, these Doctors aren't God (they just think they are) and they work for YOU and you deserve to have any questions you might have answered...If you are interested in a seizure dog, contact your local epilepsy foundation (you can search on-line for it), they'll have all that information for you and they can get one free for you. They also have support groups. I use to go to on-line support groups and learned a ton..I'll see if I can't track down some of the old boards for you. |
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Date: 3/23/2004 8:03:00 AM
From Authorid: 15228
I see you are from Tennesse. I use to live in Kentucky and they trained the seizure dogs at Ft. Knox where I lived...so you won't have to go to far for one. |
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Date: 3/23/2004 8:08:00 AM
From Authorid: 15228
One other thing I learned doing some research is that in a lot of cases with woman and seizures it is connected to our hormones...unfortunatly there isn't a whole lot of research in this area..as usual woman get the short end of the research stick. I did run across one female who was herself a doctor and was taking some kind of hormone therapy to treat her seizures..but if you ask your average neurologist about the hormone/seizure connection you'll usually get a blank stare. |
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Date: 3/23/2004 8:16:00 AM
From Authorid: 15228
Here is a link to one of the sites I used occasionally, I'm amazed some of the same people are still on there considering it has been about 4 years since I was on there..I can't find the other board I used all the time and I liked better, I'll keep looking for you..people on the boards will give you links and teach you more than most doctors can about epilepsy--http://elliott.hmc.washington.edu/winetpubdiscus/ |
Date: 3/23/2004 9:21:00 AM
From Authorid: 14891
White Dove, sorry to hear about your seizures! Esp. with NO warning before having one! I guess I can feel lucky that at least I have a warning (with my daytime seizures...petimal seizures)! As for when I have Grand ma seizures, which is mostly at night, while I'm sleeping, I have no idea b/c I'm out. My warnings just before petimal seizures do vary, but mostly a feeling of fainting, blacking out, my body just feels like it is froze in one position Not cold though), feel as though the world is closing in on me, all at once, light headed, confused. Symptoms may vary with each type of seizure. It's sure not fun to have to live with, and I get very irritated when my seizures play "tricks" on me...I feel as though I'm gonna have one, then it floats away! (Dang seizures!!!!) Grrrrr!! I have this for a few days after having a full seizure! I have been on ALOT of medications before finding the right one throughout the years, and Tegretal does the best, but seems like nothing will keep them away forever. I've lived with this for many years, and have not found a way out! Again, I'm sorry to hear that you too, must deal and live with this! (As well as all others here)! May God be with you throughout each and every day!  |
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Date: 3/23/2004 12:13:00 PM ( From Author )
From Authorid: 11211
Thank you again, and again for all your help and information that you all are giving me. I hope this don't sound selfish or bad...but after reading all your comments, I feel more confident about it all now......for I'm not alone. I wish I could take it away from you....as I know you all would do for me if it were possible.....but since It's not.....I am so much more encouraged about living with it now and not letting it take over my life.....as you all have done. You have taken control of it as best as you can.....and I can tell you are not letting it rule your life.....that has helped me so very much. Thank you for talking to me about something so personal as this......I knew I would get help from you all at usm.....I always have when I needed it. This helps me so much....to be able to talk to you all about it, and learn from you....And already I feel like I have learned more today from you.....than I have from all the reading and talking the doctors have done with me. I will check back as often as I can....thank you again.....love to you always! |
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Date: 8/28/2004 12:43:00 AM
From Authorid: 16373
Hey Whitedove...I was looking around on the net and found soemthing about seizures and i thought of you so maybe this will help u........ 3 BASIC TYPES OF SEIZURES Grand Mal A Grand Mal or Tonic-Clonic seizure involves the complete body in a convulsion Petit Mal A Petit Mal or Focal seizure involves the convulsion of a part of the body Absence An Absence seizure is one in which the patient becomes unresponsive, often with little or no memory of the occurrence. The patient appears to be day-dreaming, but is non-rousable. (This is extremely rare in animals, and very hard to detect) WHAT HAPPENS IN A SEIZURE? In a seizure there is normally a stimulus that starts the brain down the path to seizing; this can be either something overt, such as ingestion of a drug, flashing lights or it could be some non-obvious change such as a drop in blood-glucose level or in body temperature. Often a patient's stimulus is the same, and after they reach their stimulus threshold, they will start the seizure process. Most patients, but not all, experience an Aura which can be a ringing or sound, smell or visual disturbance, shortly before starting into an active seizure. Most patients after experiencing a seizure will know to go lie down, or call for help, when they experience an aura. At this point the patient will probably enter the seizure (in an absence seizure, they will simply appear to be daydreaming), which can range from uncontrolled twitching of a limb or facial muscle (focal), to a full grand-mal seizure, with full body convulsions. During a seizure of either type, the patient will not be responsive. During this time the body is using tremendous amounts of energy to sustain a seizure, and the danger here is that the brain is using up oxygen very rapidly. If the patient remains in this state for more than 5 minutes, it is called Status Epilepticus (often shortened to "status") which is a life threatening emergency, requiring immediate medical attention. After the seizure has ended, in a isolated seizure, the patient will enter the post-ictal phase of the seizure. This can be thought of as the "resetting" period. The patient will often lie quietly, and allow for the body to return to normal. At this point one of 2 things can happen: The patient will return to normal, or re-enter the seizure phase. The reentry, if for a few times, is called a Cluster Seizure; if on the other hand, it is an endless cycle, this is in actuality Status Epilepticus. I always heard that you put something in their mouth to hold their tongue down but now they say not to cuz they WILL NOT swallow their tongue. But the part up there bout being over 5 minutes and its dangerous i think thats becuz like if u have a tumor or something on your brain. If yours last longer than 5 minutes i would go be checked out to be sure. You are in my thoughts and prayers always! ((HUGS)) BeeBop  |
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Date: 8/28/2004 12:45:00 AM
From Authorid: 16373
I mean to be checked out to make sure there is no damage...*Beebop* |
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Date: 8/28/2004 10:59:00 AM ( From Author )
From Authorid: 11211
Thank You Bee Bop....and as you know, i've finally got them under control....but i'm printing this off to keep....seems like i've read it somewhere before....when i was having them bad and alot....it was horrible......but thankfully now the med's have took control over them.....Hey, it's good to see you buzzzzing...lol.......around here! |
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