Can Stomach Problems Lead to Seizures?
This article is definitely gonna be for niche group of individuals, but these are things I wish I had known among a mix of diagnoses. When the purple giant meets the green giant! Epilepsy versus gastroparesis.
I thought I had my epilepsy under control
I thought I knew everything there was to know about my epilepsy and how to manage it. I had years of trials and triumphs. Years of walking through this journey and gaining confidence each day with my management skills and my ability to adjust on a dime.
That was until I was diagnosed with gastroparesis.
"Noncompliant with medication regime"
You see, throughout my entire journey with epilepsy, there was always one note in my file written over and over again by nurses, doctors, and those alike: "Noncompliant with medication regime."
Now. this drove me crazy because once I learned the importance of taking medication everyday, as prescribed, and at the same time intervals I made it my mission to do such. And if I missed a dosage my doctor was always immediately notified.
Breakthrough seizures and confusing medication levels
But even with all the hard work I was putting in, I was having breakthrough seizures and medication levels that were never in range. Strangely though, it was not consistent, some moments my drawn levels would be sky high and others they would be almost nonexistent in my system.
And let me tell you there was no convincing the doctors that I had in fact taken my medication appropriately. They believed those levels to no prevail, and I mean, why wouldn't they? There was no other metabolic explanation as to why my levels were so wonky. YET.
A seizure that landed me in the ICU
I remember ending up in the emergency room after a seizure at an urgent care one time. I was so sick, more than my usual postictal sick. The doctors ran my levels and my Keppra came back 3 times the limit it should have been. It was so bad I was placed in ICU and poison control was called.
My Keppra was held and my levels were drawn throughout my entire stay. Once they went back into range, I was titrated back on the medicine. I was discharged once I was stable.
But the same day as discharge, I had another breakthrough seizure. When my labs were drawn again, they saw that I was out of range again. Except this time, I was too low – which made no sense. I hadn't been out of the hospital for more than 24 hours. This made doctors pay attention.
Diagnosed with a GI disease
Some years later I was diagnosed with gastroparesis. Gastroparesis is the paralysis or slow motility of the stomach. This can cause an array of symptoms, but let's focus on the ones that contributed to my seizures being uncontrolled.
The first thing the doctors realized was I had something called malabsorption and this was contributing to why my levels were never in range. The next thing we pinpointed as a major issue was the amount of vomiting I was doing because I wasn't holding down my medications.
Malabsorption from stomach problems
To try and help these issues we first started with spreading my meds out to 4 times a day, that way, if I did get sick, their hope was I would have at least absorbed some of the dosages. It didn't take long for us to realize that although a good plan, it was not 1 that worked with my malabsorption.
So then we moved on to liquid medications. Their idea behind this is that it would get to my small intestines quicker and that would help with the absorption issue. This worked for a little while until my intestines also begin failing, causing the malabsorption to get worse. At this point my doctors were at a loss.
Feeling like I'd never have an answer
No one had an answer, a plan, or a solution. Until 1 doctor came to see me while I was inpatient for uncontrolled seizures. You see, I am an adult – 28 years old – and have never seen a pediatric doctor. But it took a random pediatric doctor coming to see me to completely change my life!
This man walked in my room, looked at me, and simply said, "Why has no one put you on IV Keppra?" And those were the words that changed everything. He, I learned, is a pediatric gastroenterologist but that day he changed my meds to IV and it changed my epilepsy journey.
IV medication for epilepsy
Since starting IV seizures medications, my levels are always in range. My seizures are managed to the point I go months without them!
Now this does not come without its own set of complications. I have a central line we use for my medications as well as other things needed in my health regimen. When my line goes bad, whether with infection or clot or what have you, I then lose my ability to get my seizure medications. And most the time end up inpatient until they decide what the next step is, whether its a line break or they can place a new one immediately.
So do not let me paint you a picture of all roses because there are definitely thorns.
GI problems can affect seizures
But I wanted people to know that if you have gastroparesis (or another GI illness) and epilepsy there are options in treatment! Epilepsy is hard enough without adding in an illness that makes it even harder!
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