Crohn's Disease Forum » Support Forum » Still having "seizures", not sure what's going on, pretty terrified

01-16-2014, 08:51 AM   #1
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Join Date: Aug 2011
Location: Plainville, Connecticut
Still having "seizures", not sure what's going on, pretty terrified

Wikipedia actually lists seizures as an EIM, but I didn't read the citations. The article claims it's present in about 15% of Crohn's patients, so you'd think it would be more commonly reported here if that were really the case?

So, once again I was having "partial seizures" yesterday from about 10:20 in the morning until about 5 in the evening. I still have no idea what's causing them. I thought I had narrowed it down to two meds, but yesterday disproved it because I stopped them both. Was supposed to see the neuro Friday, but they rescheduled to next week.

At least my heart didn't stop like it did a week before Christmas..?

Some weird things:
1. They always begin at work
2. They only begin in a particular office
3. They always begin at around the same time: 10:30AM, and then occur about every 110 minutes from there over the course of about 8 hours, then stop for weeks

I used to have grand mal seizures as a child, which were ultimately linked to theophyllin (which I used to take for asthma). These are very different. The aura is different (there's no visual disturbance, for one, and the physical sensation is VERY different, sort of like being submerged headfirst into freezing water, but without the cold, if that makes any sense to you.)

I don't lose consciousness during these, but last month my heart was stopping during them and then I DID lose consciousness. I was hospitalized and ultimately offered a pacemaker, and Depakote. I declined both.

My wife visualized me yesterday during an "event". There's no outward indication of the seizure unless I react purposefully to the unpleasant sensation (by closing my eyes, lying back, etc). Last month, I physically lost consciousness for up to 15 seconds in front of an RN, and later learned that my heart had stopped for 7 seconds.

The seizures (or aura, or whatever they are) last about 10-20 seconds. I feel a mild "electrical" "vibration" in my head that spreads down to my groin, and I feel that sort of "lump in the throat" sensation of descending a hill rapidly in a car. No nausea before, but after sometimes.

I've never been on anti-convulsants or other seizure meds. Before last month, it had been 22 years since my last seizure, and again, these are qualitatively and quantitatively entirely different from those ones. I'm at a loss.

The only reason they decided I was having seizures is that last month in the ER I was "calling" my cardiac arrets before they happened. They haven't caught one on an EEG. I'm a little upset about that since I spent an entire day seizing in the ER and nobody got around to hooking me up to an EEG until well into the following day after they had stopped entirely.

Into the evening yesterday, the "seizures" got worse and more frequent, so I had my dad drive me to the ER to try and get an actual EEG of them finally, found the ER 5 rows deep with flu patients, waited 3 hours, seizures stopped, went home.

An MRI has been promised, but they keep pushing back my post-hospitalization follow up. Clearly, they don't feel any urgency.

What's confounding to me is that the sensation is very similar to when I had a large, highly pressurized abscess in my gut due to my Crohn's. The surgeon called it "pus under pressure" and it caused me light headedness and diaphoretic episodes that felt very similar to this. The only new wrinkles are the head pain and my heart stopping last month, plus I can't be sure that the sensation is identical.

Yesterday afternoon, TWICE, while I was having one of these "seizures", I was standing in the kitchen talking to my wife. My speech never slurred, my awareness never broke, my knees didn't buckle, etc. I just stood there and finished my sentence, then described to her what was happening. I only closed my eyes voluntarily near the crest because the sensation was overwhelming, but she watched me the whole time and I never twitched/fell or gave any other outward indication of seizure other than my own voluntary reaction.

I used to have grand mal seizures as a kid and they were, obviously, very very different than this. I'd wake up in an ambulance on my way to the hospital for a bunch of "cover our asses" type tests and then go home.

So, I'm pretty confused and freaked out. I don't think I'm one iota closer to figuring this out than I was a month ago when my heart stopped.
01-16-2014, 10:52 AM   #2
Senior Member
muppet's Avatar
Join Date: Aug 2011
Location: Plainville, Connecticut
Has anybody here ever had blood pressure problems that resulted from an abscess or even just from a flare?

Crohn's Disease Forum » Support Forum » Still having "seizures", not sure what's going on, pretty terrified
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