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My son began having severe stomach cramps from the age of one.He was diagnosed with epilepsyof the stomach and had been on medication for thirteen years. The presentation of the seizure is what really confuses me. He screams out in pain and his body goes stiff. He has had EEG's done and all of them come back clear. The seizure lasts no more than a few seconds and he clutches at his stomach as if in pain. I need to know if there is a possibility that he was misdiagnosed and if so what can I do. My GP mentioned that it could be migraines of the stomach and really need to know how this condition would present itself. Please help!!!

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Dear Juanita,
I have had epilepsy of stomach in Iran when I was 8 years old were as nothing showes in my EEG , Ct scan, or Cat Scan. I have been told it could bePsychosomatic because the meds do not help as they should I have tried anything possible. I only have the episodes when I am angry and stressed out ONLY. Now I am starting a neuropsychological testing. Just would like to insure you that none of the doctors here are really aware of it and when I told them I have epilepsy of stomach they just laughed at me. I am 25 now still looking for answer if I found anything I will let you know and if you found anything inform me too please.
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Juanita
I have a history of migraines of the head and stomach. My physician tied these to my dairy allergy and when I omitted dairy from my diet, they disappeared.
I almost didn't post this because it seems obvious to ask, but has your son been tested for allergies?
The stomach episodes were very intense, with me crying out and convulsing in pain, followed by hours of vomiting.
Hope I didn't offend you by suggesting this.
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Juanita

My son has been diagnosed with something called cylcic vomiting from the age of 6 months, and now at age 7 it has become stomach migraines which is apparentlty a normal course for this to take. Basically it is a debilitating and highly challening disorder to manage. We have a very good specialist who has been really helpful and has helped us to identify triggers and work through a serious of medications to find the best possible support for my son. Common triggers are tiredness, excitement, such as round holiday time which was ussaully when he would get sick. and being run down, such as after a period of illness. After these times the episodes occur with alarming frequency and then seem to settle for some time. But there is some good news through our specialist paediatrician we have found that he is helped by having a daily dose of acidophyliss in chewable tablet form, (this is a live healthy bacteria that helps build good intestinal flora and help ward of any virus or illness that may trigger an attack.) Lots of rest and keeping everything calm and teaching him simple stress management anmd yoga hae worked a treat. Hope you find this useful
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My son has almost the same problem.it is started when he was a small kid.he is 12 years old and he is suffering from this desease despite of using mecidine during these period.I have almost disappointed and sometimes think even he will get better when he is older? has anyone used Depakine as the solution? would you please advice me about your own experience and if you cured let me know how?
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My son (12 yrs) has been having similar problems for over 4 years. The doctors used to say it could be IBS, constipation or something. No clue as to what was the real cause.

It started getting worse since Feb 09. He had been to ER and hospitalized several times, gone thru all tests possible from head to toe. We visited with several specialists. He couldn't go to school for several months. He has lost over 20 lbs. He is not able to eat regular food and throws up. So, we have to be creative in pushing something at least.

He was even prescribed anti depressant medications. No help there either. People could not understand. We know, he goes thru pain. He curls up when he gets episodes.

Our pediatrician & more importantly GI are very caring. They figured it out that this is stomach epilepsy. He was given notriptyline and now it has been replaced with Topamac. It seems to help. He is still off the regular food. He is able to go and spend almost the whole day at school also as he is able to manage the pain. He still has to get off early from school. And... some teachers don't even understand his condition.

Overall, it's very painful to see your dear ones go thru this suffering.

Hope my post helps someone. I look forward to any other advice.

Shiv
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HI! I am 32 years old and have had major issues with my stomach. Every time I eat, I am in massive pain. I have gone through every test imaginable and everything comes out normal. One of my friends mentioned abdominal epilepsy and I asked my GI doctor during a recent visit. He said that this diagnosis would not be possible because I get pain with food. I'm constantly in pain and the pain is elevated after eating or drinking. I've lost weight, have been having really strange sensations with my head (I feel "fuzzy brained" and sometimes it feels like someone is shaking my head and then stopping it abruptly), and am just getting worse.

For the ones who have experienced an "episode", what exactly happens? Does your tummy feel like it's doing flip flops? Are you in massive pain? I want to know how it feels to compare myself when I'm really hurting. It's been over a year and a half that I've been feeling like this and I just want to know what I have so that I can fight this.

~Need Answers in AZ
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Hello.Some one wrote for using Depakine. Well im 15 and i have Epilepsy. I had Depakine and it didnt do any good. It has a lot of side efects. I got a lot fater, I lost a lot of hair and i was beginning to fail at school, like I culdnt remember stuff as fast. Then i got off Depakine and after some time things gonne to better. So if possible do not use depacine.
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I don't think it could be stomach migraines as they last for hours and sometimes days, where as your sons only last for a short time. It still could be possible that your son was misdiagnosed, but I'm not quite sure what else it could be.

I was diagnosed with stomach migraines at the age of 10 and still have them almost 7 years later. I was left untreated so they continued past the age of 12 where they usually end. :-(

But if I was you, I'd take him to a few different doctors and hospitals and get their views on what it could be.
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Hi All. Thank you for your input. my son is now 16 and still medicated for Epilepsy i.e. Epilim and Lamitor. He still has these "seizures" and his learning has been severly affected. I am still searching for a diagnosis as i too believe he has been misdiagnosed. Unfortunatley there are no doctors in South Africa that are qualified enough to diagnose. If you all could refer me to a site or Doctor it would be greatly appreciated. I will keep you updated as to any herbal remidies that i might come across. kind regards and God bless.
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I am a 29 year old male with the same diagnosis. I wasn't diagnosed until I was 14 but by then it went into remission. I started to get sick in September of 2005 again after 10 years of no illness or episodes. I still battle this almost daily it seems like in and out of the ER I haven't been able to find a specialist with any knowledge about this disease. I am going to look up the drug your son is on. I went through years of miss diagnoses and DR's thanking it was in my head when I was little and even now. Now that I am older they think I am just drug seeking but they have no ideal what its like to not be able to hold down fluids or solid food or anything for that matter for days or a week on end constantly I might be ok for two months then sick for three or four days then one week then sick for five or six days at least they know what it is now when I was growing up in the 80's they had no ideal what cyclic vomiting was so it was a rough child hood one minute im fine 15 min later I got stop throwing up for days on end its horrible. If you have any questions feel free to write me I have some I would like to know like which DR you have that understands this disease I had to go to the mayo clinic in FL to Get my diagnosis and no DR's in GA have a clue what it its so its hard to get treated. I am treated with pain med's very strong ones which is the only thing I have found after 29 years that works but now of course i am addicted to them so its a catch 22 always be in pain and throwing up constantly and wrenching blood every couple of weeks or eat tons of pain med's and try to live a normal life. Any help would be great that you could offer basically I go to a pain clinic once a month and the ER 8 to 12 times a year I would love another alternative
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Dear Juanita,

I have been suffering from similar attacks since I was 2yrs old ( I am now 17). These attacks start with a small pain about 2cm about my navel and intensify untill I pass out. I wake up from passing out a few minutes later and then vomit. After vomitting the pain is relieved. This 'cycle' continues and gets shorter in time untill a whole cycle lasts about 5 minutes. I have these attacks at random times each year but they are now decreasing in frequency.
I have had every test imaginable but everything comes back blank.
Just out of curiosity, does this sound similar to your sons condidtion?
I was too thought to have cyclic vomting syndrome but the mediciation gave me strong heart palpitations. Does anyone know if this sounds like CVS? Anyone know any other medicine that may help with CVS?

Thank you,

P
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I have been diagnosed with Abdominal Epilepsy. It is very painful and when I am having a Seizure I hold my abdominal area. I can feel it moving. My episodes last longer than seconds though.. more often 5-10 min. My EEG's came back normal due to the fact partial seizures are sometimes more difficult to read. I started Anti convulsion medication and it has helped greatly. Since the medication had helped it also helps diagnose my condition since Anti convulsion medications don't typically help normal gastric issues. My pain isn't in the stomach, it is located right below my belly button. I do show a lot more signs of epilepsy as well. I get confusion, weakness, blank stare, I rub my fingers right before a seizure, I do have the nausea, vomiting, and irregular bowel movements too. The pain is the worst and most intense thing though. I don't know about your son or if he has any other issues that may relate. My neurologist looked into abdominal migraines but eventually ruled them out. Abdominal epilepsy is so rare and most doctors don't think of it. I hope since this post has been going on a long time that you have more answers, but also I hope this info helps. I know with epilepsy mainly abdominal it can effect different areas and sometimes the stomach.
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Hey all.  My daughter is now 10-- began exhibiting cyclical vomiting and abdominal migraines at age 3 (excruciating pain with no known origin, sensitivity to light/sound, etc).  Nothing helped.  She would be violently ill for a few hours, and then exhausted for the rest of the day, and then she wouldn't have another episode for 3-4 months... just long enough for us to think it had been a stomach bug.  When the frequency went up to every single month, we took her to a specialist (pediatric gastroenterologist).  She was diagnosed and put on Cyproheptadine (the brand name is Periactin) once a day at bedtime, because it makes you sleepy.  It is a type of antihistamine, but has shown wonderful results in keeping away abdominal migraines.  She was on it for a year, weaned off over a month, and has not had an episode since.

Every time we think she may be starting to have an episode, we give her some ibuprofen and put her in a dark, quiet area (we treat it like a migraine and try to eliminate stimuli).  I know that this won't cure everyone, but it has worked brilliantly for us.

Also, our doctor said that most children who exhibit abdominal migraines will develop into adults with regular migraines unless treated.  Best of luck.

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Hi there, ive been putting up with these exact same symptoms for the past 14 months, since the end of july 2011. And this is the first time ive actually come across something thats remotely like what im suffering.

I've been to countless doctors and told to go home , take some panadol and have a hot shower. all my tests have come up negative, ECG, bloods, etc and no one has even suggested this to me. I've had weeks on end of vomiting bile and stomach cramping to the point where i cant even pick myself out of bed, it gets so intense i'll just crumble to my knees whilst standing. My partener has sat there and felt my stomach shake and cramp without me even doing anything and it sends my body into painful convolsions.

I've been told i have reflux, and endometriosis. Yet now the doctors are looking at IBS as the problem. After reading up about this , i see only 36 cases have been reported in the last 40 years, and it disgusts me to think after reading all these posts people arent being given the treatment they so sorely need!

I've been unable to attend uni , im 22 and just about ruined an entire year of education due to this.

Do anyone else get these problems after waking up from a sleep or nap ? this is when it normally hurts the most for me, its come to the point where im too scared to go to sleep at night because i dont know how the next day will be. Im too affraid to bring this up to the doctors just beause of the responses people here have had, are they truly that ignorant to the problem? or do they just not want to deal with it ?

I lost over 40KG in the first 6 months of this, its almost like having forced bulimia, yet i cant actually eat any food when this is happening, let alone keep down water.

I'm at my wits end and i have no idea what to do about it anymore.

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