I have been diagnosed with amdominal epilepsy for two years now and have only met one other person with it. I thought maybe I could find some support on this board. I take Keppra and have been siezure free since for five months now.
[This message has been edited by Kelliecar (edited 11-24-2002).]
Unfortunatly in my case, pain triggers my siezures. Well, pain is part of my siezures as well. In abdominal epslilepsy, after a seizure you experience abdominal pain. So after EVERY siezure I must go to the hospital and be medicated. My doctors are trying to find a way around this. So far no prescribed pain medication has worked because vomitting is also part of the process so my meds must be delived IM or by IV. I have lost over 40 pounds this year due ot my siezures because of the vomitting associated with my epilepsy.Anti-nausia meds don' work because nausia is't the problem. The seizures cause the vomitting not being sick to my stomach... I am very frusterated and have no more weight to spare... I hope to find support on this board. An explantaion of Ab. Epilespy follows...
Abdominal epileptic seizures are accompanied by autonomic symptoms or signs,such as severe abdominal pain or nausea which may rise into the throat (epigastric rising),stomach pain,the rumbling sounds of gas moving in the intestines (borborygmi),belching,and vomiting. Other symptoms may include pallor,flushing,sweating,hair standing on end (piloerection),dilation of the pupils,alterations in heart rate and respiration,and urination.
These are my daughter's type of seizures, though she rarely actually vomits. Just feels like she is going to. Changing her diet helped reduce the seizures from once a week to once a month. However, she was having more seizures per day. I have finally put her on Keppra. The rumbling feeling she was still having in her stomach (which I guess were seizures) are now gone. After first week on Keppra (started this week), she has a constant runny nose, a cough, is hoarse, has a pain in her upper back, and arms and legs both are real achy. Have you experienced these side effects or any others? Did any go away? They are telling me now that she has a lesion. Second thing he said was that it was a tumor. How about you? She is only 8 years old? How long did you experience these things before you were diagnosed? Do you have any idea as to what may have caused yours? What is your diet like?? Please, I also would appreciate any help in understanding this, especially since my child is so young and cannot really describe what this feels like.
All I can tell you about mine is it came after a very hard blow to my head during a rape trauma. Mine is in the left temperal (sp?)area according to my EEG's. I have considered surgery. I go to the Mayo clinic and have met several people that have had great results.
There is a common misunderstanding that abdominal epilepsy isn't "real" epilespy, but it is. We have seizures, can't drive, and take the same medications. Our seizures just manifest themselves differently.
To answer one of your questions.... I don't have a tumor. My diet does not seem related. In other words nothing I eat triggers siezures. Extreme stress or emotions do, as does pain. As posted in my previos pose this causes a problem since abdominal epilepsy seizures are VERY painful. Please do understand that because since she is so young she might not communicate that well... Fortunatly they are shortlived.
How is your daughter doing? What have her EEGs shown other than a tumor? Do they think surgery will help in her case?
To answer another one of your questions... I also take Keppra and have no side effects and have been seizure free for five months now. (I can drive in one month!!)
There is great information on this board regarding peoples experience with this and other medications. You are fortunate she is not vomiting...
My daughter has recently started having clusters of these almost throwing up spells. It really seems to raise her heart rate. One time she was left with severe abdominal pain like you describe for 3 days. She could barely move and nothing (tylenol) helped. Now she is on the Keppra the constant rumbling/hungry feelings she was having have seemed to go away. There have been times she could not hold her urine very long during the day. She would suddenly get the urge and if I didn't get her to a bathroom fast enough, she would have an accident. She also seems to have a lot of gas. I've listened to her stomach and it sounds really crackly - like old leaves crumbling. She never had any severe head trauma. I'm so sorry to hear about yours. I know you have been through enough and didn't need this. How soon did you start having seizures after your injury? Thanks for your help. lazoo
Also, when you say you have abdominal pain, what does it feel like? A constant pain - like a throbbing migraine, shooting pains like a stabbing knife, in one specific area or pretty much all over? Hers seemed to be mostly right under the belly button. I just can't understand this. Have yours ever turned into a grand mal? She also has frequent shooting pains in her toes and fingers, which i've also read can be seizures, as well as hiccups which can indicate one has had a seizure. Her left cheek almost always is flushed - her left temporal lobe is where they found it. They are tentatively recommending surgery but will watch her have a seizure first, because when hers generalized the first thing she lost was her ability to speak. So, he said regardless of whether it is benign or not, they may not be able to operate. I'm so devastated and don't know where to go to get as much info as I can in a real speedy manner. Want her to have the best surgeon possible. Thanks for all your help, she just can't really put into words how she feels. lazoo
Unfortunatly in my case, pain triggers my siezures. Well, pain is part of my siezures as well. In abdominal epslilepsy, after a seizure you experience abdominal pain. So after EVERY siezure I must go to the hospital and be medicated. My doctors are trying to find a way around this. So far no prescribed pain medication has worked because vomitting is also part of the process so my meds must be delived IM or by IV.
The pain is severe and even hydocodone and oxydontin have not helped. I have had to have Delotted (sp) (not even morphine helped) through an IV every time. (shots don't help as well). The concern of course is having this done too frequently. I have found that the pain pretty much will remail for days and trigger another seizure unless I do this.
My pain is under my chest but is different for everyone. Sorry she is having so much trouble. Feel free to e-mail me and we can trade information.
To answer more of your questions. The pain is a constant pain. Since hers is beneath her belly button it must be more gatrointestinal. Mine is more in the stomach. Have they done an upper or lower GI series? What about an endoscopy?
I have met people that have the shooting pain in the toes and figures at the Mayo Clinic where I go during a seizure, but I have never had this. Mine is also in my left temporal lobe. Intersting...
My seizures started about six months after the trauma..
Many people have trouble with urination etc. with their seizures so don't feel bad about this. How is she doing on the Keppra?
Kelliecar - Thanks so much for your reply. She seems to be doing better on the Keppra - at least the funny feelings/rumbling, etc she was complaining of have gone away. Strange such a feeling could possibly be a seizure. She does have a runny nose and constant cough since starting the Keppra and did have some pain in the kidney area after the first 2 days on it, but that seems to have gone away. I'm very concerned, however, about what it is going to do to her later. Read of many, many kids on this med. After about 6 months, turns them into biting, screaming, punching rages that last up to 3 hours at a time. Right now she is on only 125 mg to be upped next week to 250mg. What dosage are you on? Are you having any effects emotionally. nkrett, a previous poster, had to take her daughter off due to emotional reasons, she's about 17, I think. Hope all is well with you. Do they see anything on your MRI, like a scar? Thanks so much for your help. How long do your seizures last? lazoo
I take 500mg of Keppra twice a day. The portion of my seizures where I fall down, pass out, and vomit are about five minutes. Then I am very dazed, confused, sleepy, and am a lot of pain. This lasts from 30 minutes to over a day. No, my MRI does not show a scar. I am a candidate for surgery though and may consider it if I can convince myself it could put an end to all of this.
I had a seizure yesterday because my sons snake got out and I found it in my shower...after I was in it. I am very scared of snakes and any extreme emotional experience triggers my seizures. It was my first one in a while... Fortunalty, I have a seizure dog, Dega, which is a big help to me and I didn't fall and get hurt since he got my husband. It is the only way my husband would every leave me alone in the house. They are very expensive but I was able to get my asailant to cover the expenses since his attack caused my epilepsy.
Since your daugher has frequent seizures you may want to consider a seizure dog. Just a thought. It may help you relax a little.
I hope that Keppra works out for her and she doesn't have the difficulties that you mentioned some of the other children have suffered from. I guess you will know pretty soon. It really has helped me. I used to have several a day. Does she have a scar? What is it?
They are now telling me it is a tumor. If they can't find anything on your MRI, how can they do surgery? What does the dog do to help you? She has a little Maltese, but the thing only wants to lie down on her when she's resting between seizures. How old is your son? Do you have other children? How do they handle your seizures? Does it scare them? Does your heart rate get really elevated during a seizure and afterwards? Thanks for any help. They are tentatively suggesting surgery for my daughter, but feel it may be too close to a critical area. Please pray for her. Heard they can do radiation and chemo. Thanks, lazoo
A seizure dog is a dog that has been trained to respond to or warn of an impending seizure in someone who has epilepsy.
There are two different types of seizure dogs:
A response dog might be trained to bark when a child has a seizure so that family members know what is happening, or might lie next to someone having a seizure to keep them from harm, or might even be trained to activate some kind of pre-programmed device such as a pedal that rings an alarm.
A seizure alert dog might go through a number of actions that are different from its usual activities if it senses that its owner is going to have a seizure. Pawing, running in circles, coming and sitting close by, even barking directly at the person have been reported.
I am and will continue to pray for your daughter. Please get multiple opinions... She is young and has her youth and strength on her side. The people on this board are very supportive so take advantage of it.
My son turns 14 tomorrow. He still doesn't handle it very well since my seizures are still a pretty recent development. They really scare him and he is worried that I may die from them even though I won't
It is my understanding that since they know the area of my brain where my seizures come from they can stimulate those areas while I am awake during surgery and remove the areas that trigger the seizures. I hope I didn't misunderstand. Do you understand something differntly?
My heart rate does not race during seizures. Maybe hers does because she is in pain or scared.
Please let me know how she is and how your visit goes.
[This message has been edited by Kelliecar (edited 12-10-2002).]
I have Abdominal Epilepsy. I am 38. Do you know of any specialists in this field? I have been told that there are no cases as bad as mine, so if you need some one to talk to, let me know.Mine last 7 days to the day almost every time...no food or water for seven days is very hard to live through, especially when you are throwing up the whole time.When I was a young boy, they put me on Phenobarbital and the seizures stopped, so they took me off of it, and they stopped from age 9 to 21. Then came the alcohol poisoning, (about 16 margaritas). after that they never went away again. Body temperature is a good deterrent to mine, meaning, if I change my body temp., they sometimes stop after the aura. For example, I start burning up inside and start sweating, but to the touch I feel cold and clammy. If I get in a scalding hot tub and change my body temp., I can sometimes stop it from happening at all.Please reply to this as I have not met anyone who has this.I can give you alot of info I have about mine also.