Abdominal Epilepsy...does it exist in adults?

[elizzza811]

From what I've been reading, this type of epilepsy is generally thought of today to be exclusive to children, and quite rare at that. But a little digging revealed that gastrointestinal symptoms once were considered one of the key symptoms among those suffering from epilepsy.

Researching abdominal epilepsy I found this:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1856820/

Previous reports 1,4 have suggested that the most common findings on EEG recording in patients with abdominal epilepsy are a burst of sharp waves and/or spikes from one or both temporal regions.

A sustained response to anticonvulsants has been accepted as one of the criteria for the diagnosis of patients with abdominal epilepsy.4

Here are the results of my latest EEG (video). Why my neurologist is calling this normal, even though she used the word 'abnormal' in the report, is beyond me.

IMPRESSION
This is an abnormal 6 hour video EEG due to the presence of 2 left frontotemporal sharp waves seen during the recording. These findings suggest epileptiform potential. No ictal events are identified. No video events were recorded. The patient complained of some right-sided head pain, as well as a weird feeling in her right calf without electrographical correlate.

Interestingly, my gastrointestinal symptoms seemed to instantly improve once my seizures were discovered and I was put on anticonvulsants. Never completely though, and over the last several months they've actually been so bothersome that I'm wondering if abdominal epilepsy might be the culprit? I seem to alternate between light-colored bowel movements and severe constipation. Already had 3 colonoscopies for these symptoms and refuse to have another. I just recently went 4 days without a bowel movement. Painful bloating. And the bloating doesn't seem to even be related to meals, or even to the constipation...often times my least-bloated days are days I skip a bowel movement, like this 4-day stretch I just mentioned. Also, I have this incessant salty salty salty taste in my mouth that not a single doctor has been able to explain. No vomiting whatsoever since I started Lamictal though. Ideas?

Anybody else taste salt 24/7? Sudden, severe bloating, even on days you've yet to eat? I'm starting to think I have some sort of rare disease.

 

[Nakamova]

elizzza, have you been tested for a gluten allergy or sensitivity? Some of the symptoms overlap with abdominal epilepsy, and there may be a correlation between the two. (See http://www.ncbi.nlm.nih.gov/pubmed/19244266.) A gluten-free diet might help with any seizure symptoms as well as with the bloating and other digestive issues.

Potential causes of the salty taste:
-- medication side effect -- maybe the Lamictal (or other med if you are one?) is the culprit. See http://www.crazyboards.org/forums/index.php/topic/20316-salty-taste-wlamictal-lunesta/
-- GERD (do you suffer from reflux?)
-- dental issues/gum disease
-- hormonal issues related to menopause

 

[elizzza811]

Thanks. I'm actually on a gluten-free diet (for over a year), and it's made no difference whatsoever. I spent a few months on a totally allergen-free diet too (no corn, soy, dairy, eggs...) for maybe 2 months - again, no difference. And though I'm almost 50, the salty taste has been around for at least 10 years, right around the time I came off Klonopin. And like I said, sometimes the bloating comes on suddenly when I haven't even eaten. Nobody gets it...thanks though...

 

[sunny_88]

Hi, new to these forums (and Epilepsy).

I've never heard of Abdominal Epilepsy but I do understand the connection of Gastrointestinal issues and Seizures.

Way before I knew what seizures were (besides ones that consisted of convulsions) I would have these "attacks" of vertigo, disorientation (felt like everything was unreal), mouth salivation, and severe gas and abdominal pain/need to pass gas.

I saw a Gastroenterologist/did a colonoscopy/went gluten and dairy free/went on a IBS medication. All I really found out with all of that is I am lactose intolerant. After that my General Doctor just thought it was maybe anxiety attacks.

But when I saw a Neurologist for Migraines he suggested this was a type of seizure (Simple Partial?) and did an EEG to confirm. I would have never thought to go see a Neurologist for excessive saliva and a sudden need to pass gas! I was quite surprised.

 

[Lynda]

I have been getting epigastric seizures...they are scary, they are horrible, they are of course not full grand mal or petit mal seizures...but they leave me feeling like "I am not me" feeling scared in general, feeling my surroundings are not usual or look different....I think I would rather lose a limb or worse than feel like this....getting really fed up with it and with the fact that most people do not understand it

 

[Nakamova]

For those in the know, the rising nausea + dread sensation is a fairly typical simple partial symptom. But most people are ignorant of Simple Partial seizures altogether. They tend to be familiar with tonic-clonics (through distorted media portrayals), but even then don't really understand what's going on.

You might want to ask your neuro to provide you with a printout about simple partial seizures to show others.

 

[Lynda]

I don't understand the tonic clonic thing....but sure do not like the Epigastric Rising Abdominal Seizures....the "butterflies" the fear, the uncertainty, most of all.....the De-realization....that is over and above the worst......I don't know how much more of this I can stand...it is horrible....still waiting on an app't with a neurologist. Thanks again for your reply

 

[Nakamova]

I don't understand the tonic clonic thing

tonic-clonic is the official name for what used to be called "grand mal" seizures.

 

[Lynda]

Ohhh I see....well thank God I don't get those...or I'd rather be dead. Thus the anti-seizure pills I guess...to prevent me from getting tonic-clonic. Don't know if it is the epi-gastric rising giving me the de-realization or the Valproic Acid...or a bit of both...from what I read it IS a side affect of the medication but so is the condition.....really hate this whole scene. I am otherwise a very young 71....great sense of humor...love being with people...love going to musical performances...being with friends and family...but when I get this MONSTER on average once a month or month and a half...I just want to lie down and give up.....just not ME !!!!

 

[MMRocks]

I have been reading a lot about this lately. I cannot post links as I am a newbie to forum. So I'm putting things in quotes that Google well.

There are great articles on "second brain" and the "brain in your gut". They have found brain cells in the gut and even named it as a new system, "enteric nervous system".

They have also found gut cells in the brain, that have crossed the blood-brain barrier. There are things that damage and improve blood brain barrier, so that's worth looking into.

They have also proved that injesting probiotics not only improves the gut but the brain too, they have found gut probiotics in brain. So much research on this right now I wish I could post links.

 

[Nakamova]

They have also proved that injesting probiotics not only improves the gut but the brain too, they have found gut probiotics in brain. So much research on this right now I wish I could post links.

It's a very exciting area of study, but it's still in its infancy in terms of drawing widespread conclusions for humans. Just yesterday I heard on the radio about a mouse study that appears to link probiotics in the gut to reduced anxiety in the brain. The scientists think that perhaps the probiotics in the mouse gut somehow triggers the vagus nerve which in turn signals the brain to produce more GABA (the neurotransmitter that "calms" us). But they don't know for sure, and of course it may only hold true for mice. A very small study suggested that there might be similar results for humans, but right now most of the science is preclinical and speculative, i.e. not yet ready for primetime in humans.
Here's a link to the mouse study: http://www.pnas.org/content/108/38/16050 if you scroll down you'll find references to other studies in this area. The journal of Neuroscience notes that:

The discovery of the size and complexity of the human microbiome has resulted in an ongoing reevaluation of many concepts of health and disease, including diseases affecting the CNS. A growing body of preclinical literature has demonstrated bidirectional signaling between the brain and the gut microbiome, involving multiple neurocrine and endocrine signaling mechanisms. While psychological and physical stressors can affect the composition and metabolic activity of the gut microbiota, experimental changes to the gut microbiome can affect emotional behavior and related brain systems. These findings have resulted in speculation that alterations in the gut microbiome may play a pathophysiological role in human brain diseases, including autism spectrum disorder, anxiety, depression, and chronic pain. Ongoing large-scale population-based studies of the gut microbiome and brain imaging studies looking at the effect of gut microbiome modulation on brain responses to emotion-related stimuli are seeking to validate these speculations. This article is a summary of emerging topics covered in a symposium and is not meant to be a comprehensive review of the subject.

 

[Keith]

There's much that can be done now to address gut imbalances as cause of seizure disorders. Gut-brain is a two-way street. I know of two people on this forum where seizures were resolved by addressing the gut, not the brain.

Things like PCR stool testing and organic acid urine testing along with probiotic and prebiotic therapy to balance flora . . .

It's interesting that 90% of the nerve fibers of the vagus travel from gut to brain, not brain to gut.

 

[Lynda]

Butt to Brain

It makes perfect sense to me that there is a definite connection between butt and brain when it comes to epi-gastric seizures. I have had MRI etc and all is normal except for a slight abnormality on the left temporal side ...so I rather think it is more to be dealt with in the gut....thanks Keith:woot:

 

[epileric]

It's interesting that 90% of the nerve fibers of the vagus travel from gut to brain, not brain to gut.

I know you love that expression Keith but it's not interesting, it's not even true.

The vagus nerve supplies motor parasympathetic fibers to all the organs except the suprarenal (adrenal) glands, from the neck down to the second segment of the transverse colon. The vagus also controls a few skeletal muscles, notable ones being:

Cricothyroid muscle
Levator veli palatini muscle
Salpingopharyngeus muscle
Palatoglossus muscle
Palatopharyngeus muscle
Superior, middle and inferior pharyngeal constrictors
Muscles of the larynx (speech).

 

[Keith]

"scientists were shocked to learn that about 90 percent of the fibers in the primary visceral nerve, the vagus, carry information from the gut to the brain and not the other way around."
http://www.scientificamerican.com/article/gut-second-brain/

 

[Lynda]

got an email referring me back to this link....well, now I am confused again....two people who disagree whole heartedly. Guess I will wait my time for an appointment with the neurologist...this is bad enough without any "in fighting" I hope I am wrong about this, as I thought we were all here for the same reason...to compare and share ....not to outdo theories etc ....feeling sad

 

[Nakamova]

Hi Lynda --

There are many new areas being explored in terms of both causes and treatments for epilepsy. A lot of them are intriguing but still speculative at this point. But you're right -- we're all here to compare and share. And support!

Regardless of the current scientific thinking, the seizure symptoms you describe sound like partial seizures, and your neuro should be able to help you figure out the next steps for treating them.

 

[Lynda]

Thank you Nakamova.....it is just so frustrating....the worst part as I think I have mentioned before is the "de-realization" symptom that goes along with the "epi-gastric rising" sensation.....this whole thing is totally consuming me. My doc put in the referral last April and he said it can take anywhere from a year to 18 months to get in to see a neurologist....if I live that long

 

[Nakamova]

he said it can take anywhere from a year to 18 months to get in to see a neurologist

Wow, that is just ridiculous that it might take so long. Ask for the tel. number of the neurologist's office, and call once a week to make sure the referral hasn't been lost, and ask them for a status update. And ask if you can get put on the "cancellation list" so that if someone cancels you will be given the option to take their spot.

 

[Lynda]

yes, maybe I should do that....would like to get to the bottom of this. I don't even know if "they" know what causes this or triggers it or just what the whole thing is...thanks again....