Convulsions after fainting.

Posted by artist01 @artist01, Sep 20, 2022

Has anyone with Crohns experienced syncope followed by convulsions? (Not seizures. I don't lose conscience. )

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@artist01, this sounds very unsettling. I hope you did fall or injure yourself. I'm tagging a few other members living with Crohn's, like @guener @macombs @jcarndt and @ken82 who may have some thoughts for you.

Artist01, did your doctors suggest that the fainting, syncope and convulsions were related to Crohn's disease?

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Hi Artist01,
I haven't been dx with crohn's but have had acute bowel problems with many misdiagnoses for decades. A few years back I had a TIA thought to be caused by 'straining' on the loo. I had suffered paradoxical diarrhoea for many years. Luckily my late hubby hadn't been able to get to work on the day I had the TIA because of flooding, and when he found me in a very confused state called the Ambo's. I have no memory of it happening or of the day before. I was 'much more' spaced out than I let on for many months - it affected the timeline of family life events for some time, and my once excellent ability to do maths in my head is still very much a problem.
Naturally, I wasn't allowed to drive until I passed further Neurological tests 6 months in. For a couple of years after the TIA I'd experience what I thought of as brain freezes - my brain would suddenly feel like it was being squeezed & released a number of times, along with a very tingly sensation.

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@annewithane
Hi AnnE!
Love that clever handle.
I can certainly relate to your experience. I truly empathize with all you've gone through for such a long time.
Me too. Ugh.
I'm still in the hospital and lots of tests going on. Friday I'll have an EEG so that may give some answers regarding the strange (SEVEN !) convulsions I had on Saturday morning, following passing out after a trip to the loo, same as you! So worrisome. They're starting me on Dicetel (Primaverium) tonight, 50 mg 3x daily, so I'm hopeful again after so many misdiagnoses over the years, with no viable treatment.
I'm too weary tonight to answer you fully, AnnE, (lol) but I'm very grateful for your response. More later...! Warmest regards, Laurie

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@colleenyoung

@artist01, this sounds very unsettling. I hope you did fall or injure yourself. I'm tagging a few other members living with Crohn's, like @guener @macombs @jcarndt and @ken82 who may have some thoughts for you.

Artist01, did your doctors suggest that the fainting, syncope and convulsions were related to Crohn's disease?

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@colleenyoung
Thanks so much for your welcome response to my latest plea, Colleen. Did you roll your eyes and say "What's next for @artist01?" I'll bet you did. Lol.
As usual, I'm a complex mystery for my team of doctors. My cardiologist said "For you, Laurie, it takes a village."
Anyway, onward and upward!
The docs don't yet know the cause of the convulsions. It might be vasovagul triggered by the bathroom activity (my polite description, but all IBD and IBS folks will know.) I also have a blocked carotid artery, and a coronary bundle branch block, both of which could momentarily stop the heart, so those are possible culprits too. Friday's scheduled EEG might tell the tale, I hope. I've been wearing a Holter monitor 24/7 for 5 days and have had several abnormal ECGs, which is normal for me.
Luckily, I didn't break any bones or suffer any other injuries. Just my pride!
I'm grateful for your tagging other Connect members. @annewithane has responded with a very helpful and supportive message. Best regards, Colleen. Keep up the good work!

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@artist01

@annewithane
Hi AnnE!
Love that clever handle.
I can certainly relate to your experience. I truly empathize with all you've gone through for such a long time.
Me too. Ugh.
I'm still in the hospital and lots of tests going on. Friday I'll have an EEG so that may give some answers regarding the strange (SEVEN !) convulsions I had on Saturday morning, following passing out after a trip to the loo, same as you! So worrisome. They're starting me on Dicetel (Primaverium) tonight, 50 mg 3x daily, so I'm hopeful again after so many misdiagnoses over the years, with no viable treatment.
I'm too weary tonight to answer you fully, AnnE, (lol) but I'm very grateful for your response. More later...! Warmest regards, Laurie

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Oh boy, do I feel for you, Laurie😩 On this beautiful spring afternoon here , I'm currently horizontal in bed exhausted, nursing a bleeding bum, 10mgs of morphine in me and a hot water bottle on my side.
So just a quick reply with a little more food for thought and no need for a quick reply, Laurie.
A Bowel Transit Study this time last year revealed my tortuous colon and the rather large obstruction at the splenic flexure, in action. I have screenshots of the x-rays which I'll post in a new thread one day soon.
My second opinion surgeon referred me for it and when saw the results recommended I have a total colectomy! I want more investigation first. Have been requesting a colonoscopy for 11-12 yrs but no go. Twice in the last couple of years I've fallen off my loo with no warning.
Am booked for a colonoscopy on 2 Nov. at my hefty cost, at a private clinic.
Hope you get some answers soon.
Sending healing vibes your way💞

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@annewithane . Oh, my dear, dear girl! It's just not fair what you're going through. I'm so sorry.
Like you, I'm too tired to type more tonight, but I'll look forward to seeing those pics when you're up to it. Take care. Rest easy. Hugs, Laurie 😊

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@annewithane

Oh boy, do I feel for you, Laurie😩 On this beautiful spring afternoon here , I'm currently horizontal in bed exhausted, nursing a bleeding bum, 10mgs of morphine in me and a hot water bottle on my side.
So just a quick reply with a little more food for thought and no need for a quick reply, Laurie.
A Bowel Transit Study this time last year revealed my tortuous colon and the rather large obstruction at the splenic flexure, in action. I have screenshots of the x-rays which I'll post in a new thread one day soon.
My second opinion surgeon referred me for it and when saw the results recommended I have a total colectomy! I want more investigation first. Have been requesting a colonoscopy for 11-12 yrs but no go. Twice in the last couple of years I've fallen off my loo with no warning.
Am booked for a colonoscopy on 2 Nov. at my hefty cost, at a private clinic.
Hope you get some answers soon.
Sending healing vibes your way💞

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Screenshot of my tortuous colon via a Colonography I had in Sept 2015. The Report only stated a collapsed area in descending Colon.
And a screenshot of the plain x-ray taken on day 7 of the Bowel Transit Study, I had in June 2021. The wee circles you see are radiopaque markers which come in lots of 10 sealed in gel capsules and taken one capsule per day. The last capsule has 6 rectangle shaped markers - 66 radiopaque markers in total.
Normal diet & no laxatives during study. Only '1' tiny marker made it through the obstruction that is at my splenic flexure. For years I'd been repeatedly told by the head colorectal surgeon at my local hospital that I did not have an obstruction and did not fit the criteria to have a colonoscopy.
I've never stopped looking for answers and had some private consults with some womens health physio's and it was the head lecturer of the School of Physio whom after a number of examinations suggested in 2018 I did indeed have an obstruction in my descending colon.
It causes me much pain & problems as you can imagine.

If anyone else has x-rays of their tortuous colon I'd love to see you share them.

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@artist01

@annewithane . Oh, my dear, dear girl! It's just not fair what you're going through. I'm so sorry.
Like you, I'm too tired to type more tonight, but I'll look forward to seeing those pics when you're up to it. Take care. Rest easy. Hugs, Laurie 😊

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Hi Laurie, I hope you had a restful night and are feeling a bit better, although hospitals can be noisy places throughout the night.
I have posted pix of screenshots of my poor old tortured colon and gnarly obstruction in a reply to myself. They're not pretty😩
Being new here I'm still finding my way around this awesome website and now thinking I should maybe have posted them in the thread on redundant/tortured colon.

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@artist01

@annewithane
Hi AnnE!
Love that clever handle.
I can certainly relate to your experience. I truly empathize with all you've gone through for such a long time.
Me too. Ugh.
I'm still in the hospital and lots of tests going on. Friday I'll have an EEG so that may give some answers regarding the strange (SEVEN !) convulsions I had on Saturday morning, following passing out after a trip to the loo, same as you! So worrisome. They're starting me on Dicetel (Primaverium) tonight, 50 mg 3x daily, so I'm hopeful again after so many misdiagnoses over the years, with no viable treatment.
I'm too weary tonight to answer you fully, AnnE, (lol) but I'm very grateful for your response. More later...! Warmest regards, Laurie

Jump to this post

Wishing you all the best with your EEG today, Laurie👍 Hope you get some answers💞

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@annewithane

Wishing you all the best with your EEG today, Laurie👍 Hope you get some answers💞

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@annewithane
Hi Anne! So sorry for not responding earlier but you know the drill, I'm sure! I had an awful time on the morning I was ambulanced to the hospital. I think I posted before on Connect that I had SEVEN seizure episodes within 2 or 3 hours. Then, while there, I was prescribed Dicetel (Pinaverium) for IBD/IBS (??) and was violently ill for 2 days as a reaction to that. While having my EEG I had a further seizure during the test, all caught on video. Two more seizures while still in the EEG clinic. How opportune, huh?
Results of the EEG state not epileptic and epilepsy medication won't help. Relieved at that news!
A CT Scan is ordered, but I don't know how long it will take to get that.
Meanwhile, I had a further seizure at 6:00 a.m. this morning. I'd been up for about an hour by then.
I've never had anything like this before in my life.
I worry about what's going on.
Very strange indeed. And frightening.
Your posted photos were awesome to see. You're so photogenic, Anne!
Kidding aside, it's plain to see why you suffered as you did. You were very fortunate to finally find a doctor that LISTENED, and would take action. Good for you for being tenacious enough not to give up til you got the answers you needed. Bravo!!
I can sure relate.
Warmest regards,
Laur

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