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I believe my husband has abdominal epilepsy

Fri, 07/07/2017 - 23:37
I'm not new to epilepsy. Our 25 year old son has complex partial seizure disorder with secondary generalization. My husband has had digestive issues for many years (25-30). It wasn't too bad in the 1990s. He would only have symptoms 3-4 times a year. In the 2000s, it gradually started getting worse. Now, he has episodes once or twice a month. It starts with abdominal distension, pain, nausea and vomiting. Then he gets diarrhea later that day or the next day. He's been to a number of GI doctors. At first, he was told it was IBSD. He's had every test you can imagine but they are all normal. Three years ago, a new GI doc mentioned cyclic vomiting syndrome, but then ruled that out. It got me started researching CVS. That led me to abdominal migraines, which led me to abdominal epilepsy. Bingo! That made the most sense to me. His neuro did give him an EEG in 2014, but it was normal. Maybe because he wasn't having an episode then? I have asked the neuro and the PCP to prescribe Depakote, but they refused. I thought it wouldn't hurt to try. No other medications ever helped him. In May of this year, hubby was prescribed Depakote for an unrelated issue. Guess what? He hasn't had an episode since May 8. He sees the neuro later this month. Since the treatment is working, does that indicate what the diagnosis is? He also had early onset Alzheimer's disease. That's why he was prescribed the Depakote. It is often prescribed off label for extreme agitation in Alzheimer's. That's why he got it. It's very late in his life to get the right medication, but I'll take It! Anything that makes his remaining few years comfortable is wonderful!

Comments

definitely mention this. it's

Submitted by Amy Jo on Sat, 2017-07-08 - 11:55
definitely mention this. it's support that abdominal migraine or epilepsy is possible.  it doesn't prove epilepsy or migraine specifically that I can tell. are there any other issues/complaints that have cleared up? migraine and epilepsy are probably related so maybe it isn't a big deal. quality of life is super important so I hope his doc starts listening better after this, otherwise it might require switching docs at some point.

Well, he is calmer, as hoped.

Submitted by Elainechem on Sat, 2017-07-08 - 12:26
Well, he is calmer, as hoped. He hasn't had digestive issues in two months. That's all that has changed. 

there are abdominal migraines

Submitted by Amy Jo on Sat, 2017-07-08 - 15:58
there are abdominal migraines without headaches, more often in kids where it turns to more common migraines as adults. they call the gut the second brain for good reason yet it's less understood than the brain  so I wouldn't assume things always happen certain ways just like absence seizures are usually in kids but there are certainly adults with them, just isn't common. one of my kids has epilepsy, another has had one common (debilitating) migraine, another has somewhat frequent (as of this year) visual migraines. the kid with visual migraines has some stomach issues that go along with his immediate post migraine period. all the migraine kids started migraines after the youngest was dx with epilepsy (now known to be genetic) so I have read there are a lot of genetic issues researchers are interested in and that it is complex.

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