Seizures caused by Crohn's Disease

[Regular Joe]

Hi all,

Just got back from the neurologist. Anymore, I'm not sure I want to talk about symptoms with this guy. Maybe I'll just experience the weird things that happen and keep my mouth shut.

I had a strange experience while driving along Friday night. I called it a "cognitive disturbance". It just so happened that I had the neuro appointment today, which is regular with migraine treatment. Let me blaze the way for a "new symptom" which the neurologist said is almost surely related to Crohn's and other autoimmune disorders.

After describing the "event", followed by a panic attack (which I don't usually have - years apart if I do), followed by a severe migraine. I called "Nurse on call" and she was satisfied to attribute it to dehydration. I told the neuro guy.

"Naawpp. Not dehydration."

Of course followed by the clueless look on my face. He had an intern in training with him. He gives him a look.

"Seizure. Right?"

The guy in training nodding his head all along.

"Yup."

Autoimmune disorders have a high incidence of causing or inducing epileptic and non-epilectic seizures. There's also a close correlation between migraine and epileptic syndromes. That's what the neurologist said. He's the genius, and he hasn't been wrong yet.

I looked it up, and sure enough, "inflammatory disorders" cross into that category. "Autoimmune Disorders" are what my surgeon called "systemic" - they involve more than a single organ or body "system". I hit on several references, so you can google for yourself. Here's a pretty basic link: http://professionals.epilepsy.com/page/inflammatory.html

Sure enough, Crohn's Disease "etiology" crosses into the CNS (Central Nervous System) - Right Nurse Silvermoon?

Guess I must have missed that memo. I walked into the neurologist's office this morning, just an ordinary "migraine management" visit? Bliss ignorance at it's best - then I make the mistake of telling the guy about my little "cognitive disturbance" on Friday night.

Next thing I know I'm getting 24 electrodes glued to my head, sitting still on my back for an hour, intentionally being told to hyperventilate, then getting blasted with a strobe-light...and the grand finale: "Name 5 states that begin with the letter "M". We finish up after about two hours, and the technician on the "Epilepsy" floor at the Cleveland Clinic neurology lab looks at me surprised and asks "You're working?" (because I had my briefcase and was on my way to the office)

Now how do you like your "official" Crohn's Disease diagnosis?

I thought I had an idea about how this disease affects us. Erego this morning...I don't know about anyone else, but today I'm a little bit dumbfounded ... again.

 

[MapleLeafGirl]

Great something else to maybe look forward too It just never seems to stop.

Sorry to hear you had to go through that Joe - Did they give you any results or are you waiting?

 

[Cat-a-Tonic]

Oh my, Joe, I had no idea! I have been getting migraines just since I first became ill last year, so that's definitely something to ask my doctor about as well (add it to the looooong list of things to ask the doc about, ha ha). Are you still allowed to work and drive?

 

[My Butt Hurts]

Okay. Is there any symptom that Crohn's sufferers DON'T get? Just ONE?
Right after diagnosis, I remember being at work, trying to lead a class, and for 2 long minutes, all of the words coming out of my mouth were twisted at the end. I couldn't speak properly, and I was hot and dizzy in the middle of winter. It hasn't happened since, but it was so scary I will never forget it. I never mentioned it to my GI, because it didn't sound like a Crohn's thing, but it does sound like a central nervous system thing. Jeez.. this is crazyness.

 

[Astra]

Yeah Joe, that's just sucks mate!
if it's not one thing it's another!
heard about my new dx, Arnold's Neuralgia! WTF?
in agony man and now on another med, amitriptyline!
just got over the entorcort fog!!
so how long do you have to wait now for results and what's the prognosis?
try and take it easy!
xxx

 

[Silvermoon]

... - Right Nurse Silvermoon?....

Lol. As my brother-in-law repeated a kabillion times over the weekend visit... "You got it!"

I am beginning to realize that, for having this disease for over 24 years, I know **** about it!! (sorry - no pun intended...)

I used to think that all the "idiocyncracies" that went with Crohn's disease were more related to malnutrition and not being able to absorb the right minerals/vitamins/nutrients to keep certain systems functioning at their optimal level.

But now looking at it, and learning more about other diseases, I think I had it backwards all along, and it looks like a lot of the researches think so too.

I think, basically, we need to put aside the terms "IBD' or "IBS' or "asthma" or "MS" or "rheumatoid arthritis" or any of the other kabillion autoimmune diseases out there.... and get back to the route of the term autoimmune diseases.

All of us lucky people who have the misfortune of dealing with this stuff have a faulty immune system.... in some people, it is the part of the immune system that controls the bowel that goes into overdrive... in some, it is the part of the system that protects the lungs, etc....

BUT, if we have ONE part that goes into overdrive, surely other parts are going to be affected as well. Thus we get the "extra-intestinal manifestations"... inflammed eyes, inflammed ears, inflammed parts of skin, sore joints, sore teeth, sore muscles, and, apparently, inflammed nerves as well.

It definitely sheds another light onto why a "cure" is so hard to find...short of shutting down the whole immune system, what else can be done? Maybe that is why prednisone was so effective, and maybe why some of these EIMs are showing up now...less use of prednisone = shutting down only specific parts of the immune system = other areas of the body still becoming inflammed as the part of the immune system that controls that particular body part is still active..... Thus enters stem cell transplants, to grow a whole new, hopefully healthy, immune system.....

Sucks to hear about you finding yet another issue with these damned disease, Joe. Athough, I guess, which each new "symptom" comes more answers as to why we feel so crappy all the time.... each new symptom adds "fuel to the fire" for those who need to fight to have IBD put on a "disablility" list so better benefits can be made available for people who are diagnosed. Crappy that we have to be the guinea pigs to try all these new EIMs out, but it seems we only have about 2 options left...keep walking or give up.... I tried the giving up thing...I believe you have too...so I guess we just keep trudging on......

Hope your day gets better. Find that lovely girl you got, give her a big smooch, and tell her how much you love her and how happy you are to be alive with her.....

I wish you well.

 

[Regular Joe]

Hi Kelly,

No results today. The technician said they can lose their jobs if they disclose anything. The neurologist told me to call him in 2-3 days. I'm not sure I even want to call him back.

Crohn's disease is about the most absurd disease I've ever experienced. It knows no limits. It goes where it wants to go, does whatever it wants to do - takes us wherever it wants to take us. Cancer? Sure why not? How about a little colon polyp? Epilepsy? No problem! Here's a seizure or two. Hey? Wanna get a new knee or hip? We're having a tent sale!

And here we are, like kids in the roller coaster car when the brace locks in your lap. Here we go - no hill is too steep! Along the an insane roller-coaster ride into the "funhouse" from hell. I won't even ask "what's next?"

I don't remember signing up for Epilepsy? Must be in the "fine print". I guess I feel a little frustrated ... I mean hell, I'm just driving down the road after dinner with a smile on my face. Next thing I know, I'm walking into a hornets nest! I never had a "seizure" before, I didn't even know I was having a seizure. It was almost the weirdest thing I ever felt. Except the TIA (mini-stroke) a few years ago. It was like my mind was literally split into two parallel universes: One was driving the car, fully alert, fully conscious and capable of driving safely -- then the other I was having some crazy nonsensical "dream" - it was like having a crazy dream - all jumbled up thoughts and visuals. And these are going on at the same time and I'm experiencing them together.

When the "dream" stopped, I blurted out loud, while I'm still driving to my son's house "What the f___K just happened?" A very strange "event".

 

[DustyKat]

I DON'T WANT TO HEAR THIS!!!!!!!!!!

No seriously Joe thanks for posting this. Roo is in the process of being investigated by a Neurologist for her *twitchy* things she gets. She's had her EEG, her MRI last night and back to the specialist tomorrow. So now just waiting to see what he comes up with, if anything.

Crohns is such a lovely disease isn't it?????

Dusty.

 

[Regular Joe]

I remember being at work, trying to lead a class, and for 2 long minutes, all of the words coming out of my mouth were twisted at the end. I couldn't speak properly, and I was hot and dizzy in the middle of winter.

That is exactly what would be called a "seizure". And here's the funny thing, I had one similar to yours maybe last year sometime. All the words comng out of my mouth were totally unassociated. Scared the hell out of me too. I didn't have the hot flash or diziness. But with Friday's "event", I did get the hot flash, diziness, along with a "panic attack".

Ya know, it is helpful to talk about these things here, because here you've been keeping something awfully frightening completely to yourself. I do that too. It is pretty awesome to realize so many of us (like Dusty's daughter) have had "CNS episodes", and lo and behold they're related to Crohn's disease - AND DOCUMENTED! Neurologists are scary people to be visiting in the first place, especially when those "weird" symptoms we have involve some kind of malfuntion that could induce a coma.

Thanks for sharing MBH and Dusty.

 

[Entchen]

Joe, my jaw dropped when I read what you wrote about seizure activity being linked to Crohn's. Sounds like you were pretty surprised, too! If you need to drive for work, then I really hope that it's established that you will be able to keep your license. My understanding is that feelings of panic often accompanies a seizure, or that a mild seizure may even present as panic, although I could be wrong. [Did some Googling...okay, a BMJ article suggests something similar, although I haven't scanned to find out if other articles back this up.]

Because it's autoimmune we all recognize that a whole host of things can pop up -- but seizures hadn't crossed my mind. Good grief. I have a mild neurological (movement) disorder and automatically attribute anything that seems neurological to that, but will be vigilant to see if anything new or different ever comes up.

Hope you can get some clear information from the neurologist.

 

[Regular Joe]

Just a follow up on the neurology testing.

There was no indication of neurological disease or disorder. The neurologist attributes the seizure to Crohn's Disease and/or in concert with my "anxiety disorder" (OCD).

That's a new one for me. I'll be following some of the guidelines that reduce/eliminate seizure "triggers" from an epilepsy web site. A BIGGIE is getting enough sleep. Now I have to stop my 3AM drywall and plastering home improvement work. I did good last night - I stopped at about 11:30PM. I still didn't get to sleep until 130AM.

 

[mkelley1016]

Hmmmm... thanks for the post. I was diagnosed a few years back with a nuerological thing called psuedo tumor cerebri, where my spinal fluid builds up and puts pressure on my eyes causing migraines. Could be linked maybe? Seems like everything is linked these days!! I've had 4 spinal taps to relieve the pressure cause it can result in vision loss! Yayyy!! Not sure if our situations are all that similar but I hope you find the results out, and fast! I was diagnosed w CD two weeks ago...

 

[Jennifer]

I was just checking out this particular seizure after reading this thread. Now I'm really not sure if I'm having panic attacks or not. Maybe its both. GAH! What's wrong with me?
Partial (focal) seizure
* Abnormal muscle contractionmuscle contraction
- Muscle contraction/relaxation (clonic activity) -- common
- Affects one side of the body (leg, part of the face, or other area)
- Abnormal head movements
- Forced turning of the head
* Complex, repetitive movements (such as picking at clothes) -- these are called automatisms and include:
- Abnormal mouth movements
- Lip smacking
- Behaviors that seem to be a habit
- Chewing/swallowing without cause
* Forced turning of the eyes
* Abnormal sensationsAbnormal sensations
- NumbnessNumbness, tinglingtingling, crawling sensation (like ants crawling on the skin)
- May occur in only one part of the body, or may spread
- May occur with or without motor symptoms
* Hallucinations
* Abdominal pain or discomfort
* Nausea
* Sweating
* Flushed faceFlushed face
* Dilated pupils
* Rapid heart rate/pulseRapid heart rate/pulse
Other symptoms:
* Blackout spells -- periods of time lost from memory
* Changes in visionChanges in vision
* Sensation of deja vu
* Changes in moodChanges in mood or emotion
http://www.nlm.nih.gov/medlineplus/ency/article/000697.htm

 

[dreamintwilight]

WOAH!!!!!!!

That just totally blew my mind. I actually grew up with a form of non-epilectic seizures! I used to call them "crazy things" as a child. I would be fine one moment and then I'd "black out" and do things I wasn't aware of doing that made no sense and then come back within several seconds.

I always knew one was coming because my vision would go sort of hazy, but then I wouldn't have any memory of what happened.

I got treated for it finally when I was 12 because my mom started to worry about me driving one day and if I might have one while driving. I took medicine for 2 years, I think, and stopped having them. I got an EEG before starting the medicine and they saw a dark spot on the image. After my seizures stopped form the medicine they did another EEG and the spot was gone.

They had no idea what the spot was. I am totally baffled at the possibility that I could have been showing "signs" of an autoimmune disease as early as a child, but had no clue!

 

[dreamintwilight]

The neurologist actually induced one of my "crazy things" in the office by asking me to breathe really fast as if I had just finished running a marathon. Crazy!

 

[scifi-enthusiast]

><"

Seizure... I can't think of a response to that one.

 

[Daisy]

Joe, sorry for the experience you had and sorry you had to go through all those wicked tests, especially the strobe, that would bring on an immediate migraine in me, but I'm glad that your diagnosis wasn't worse but still I can still see you being left feeling a little speechless as to why this happened to you.

I've had migraines for years, now I get mainly the aura without the severe pain.

 

[Eternal_Howl]

Hi Joe,
I realize yours is an old post. I'm a new member and the reason I signed up was this post. I have epilepsy. Have been diagnosed for about 28 years. I'm currently 'under investigation' for Crohn's Disease (have been having issues for about 8 years now, but initial testing 6 years ago wasn't conclusive of anything).

I've had this notion that all my major illnesses in my life have been related. Reading what you were told, I was like "I KNEW IT!" As I said, I haven't had a formal diagnosis. They still have to run some more tests and give me a pill cam (if it will actually fit through -otherwise it's a scope), but preliminary, it seems like this is what I have. How would I like that diagnosis? Probably as much as the others I've had, but it's not the diagnosis that bugs me. Not knowing and not knowing which direction to take does bug me. Thanks again for your post. Invaluable.