Getting closer to answers on those seizures

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Getting closer to answers on those seizures

Postby specialmomx2 » Fri May 18, 2007 10:10 am

As many of you know I have been suffering with seizures and hideous brain fog, and no-one could really tell me why. I have been to TCI and numerous specialists. I have been told it is NOT epilepsy, NOT Syringomyelia, NOT CM/TCS/CCI, NOT diabetes/lupus/RA/PA/parovirus B9 and God-Knows-what-else.

But I have never been told what it IS -other than that old chestnut: "All in your head". Yeah right. Blame the victim. Apparently, my subconcious is uniquely freakin talented in it's ability to manufacture palpitations, vision disturbances, sleepiness and seizures after (certain) meals. :P

After yesterday, I think I am finally getting close to some real answers. I thought I woudl share with you in case anyone else has had similar stuff going on.

I went to the endocrinologist for a glucose tolerence test yesterday. this test involves you fasting for twelve hours. Then they take your blood for a starting reference, then feed you a measured amount of glucose water, and test your blood again an hour later and every hour for five hours after glucose ingestion to see how your body reacts to the sugar.

My body didn't react too well.

I started to feel nasty very shortly after drinking the stuff, but put that down to the fact that it was nasty. I almost seized, but didn't.

My blood sugar went up after the first hour, (as you would expect), but after the second hour it started to descend. They stopped the test after the third hour because my sugar had plummeted.

So I officially have reactive hypoglycemia. This is like the opposite oif diabetes. They think I am overproducing insulin, but are not sure why (EDS?). We are waiting for the rest of the bloodwork results from the lab.

Mac: Where is Dr Sam Spaghetti, neuro-endo when you need him, ey? ;)

I will update you guys as I know more.

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Postby cash71 » Fri May 18, 2007 11:31 am

Very interesting Paula, don't know if I've heard of that before. I guess you are uniquely unique :D I'm glad you are getting closed to finding some answers.

Be kind for everyone you meet is fighting a harder battle (Plato)

Syrinx C3-T9, CM zero, OTC, cranial settling, dysautonomia/POTS, and ?EDS

see my blog for more info:
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Postby mac » Fri May 18, 2007 4:29 pm

Hi, mean the insanely handsome Dr. Spaghetti? I'd forgotten about him! :wink:

I am SO glad you got an answer!!! You knew it was food related, but this really does make a lot of sense. I have looked into hypoglycemia a little bit, one thing I remember reading is that a lot of alcoholics are hypoglycemic and don't know it, they are self medicating. Any alcoholics in your forebears? This was something that stayed with me b/c it made so much sense.

So, for you now, they can help you with some medication yes? To keep your blood sugar from plummeting? Sure does make sense now, doesn't it, that the seizures and black outs were caused from this. Oh, I am just so happy to hear that you have finally found out what the problem is.

You can write a chapter in my book about self advocacy, okay? You stuck with this and have quite a story about being misdiagnosed, etc...but your tenacity rewarded you.

Now, doesn't this also make sense that TCI would not take you on b/c they knew it was not something within their realm. It's becoming clear now, isn't it. Cool! Super cool!

love you

Postby Sandy » Fri May 18, 2007 7:22 pm


THat is wonderful news! I'm so glad you may finally be getting some answers.

Keep us posted, please?

sandy :D
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Postby specialmomx2 » Fri May 18, 2007 10:16 pm


Yes, The insanely handsome Dr Spaghetti! Whwere the heck is he when we need him? ;)

On the alcohol thing: Yes. many people in my family are alcoholics. In fact my not being one puts me in quite the minority.

One of my sisters has actually linked her binge drinking to blood sugar and hormone levels. She has been advised by her doc to keep chocolate handy for when that craving hits. However, she will walk past the bar of chocolate on the kitchen table to walk five blocks to the liquor store. What's UP with that? I could never walk past a bar of chocolate. I have very seldom met a chocolate I didn't like. maybe that's what saved me from alcoholism? Who knows?

Just a chapter? Man! I don't know how I could fit all that stuff into less than 100,000 words. But for you, I would try. E-mail me off-line with more details when you are ready to go.

Yes, I was frustrated with TCI at the time, but now I have to hand it to them: They did a very thorough workup on me, and did not try to DX anything that wasn't there. I definitely have EDS and lit up the questionairre for TCS like Christmas, and I looked very possibe for CCI. However, on examination, they didn't see TCS, CM, CCI or any of that stuff, and they were totally honest about it.

We don't know about meds or next steps yet. Not until the rest of the labs come back. I will definitely be referred to a nutritionist. The doc told me that in the meantime, I can stick to what worked for me thus far (teensy portions very often and practically no carbs). It is a tough diet to keep, but I can manage for another few weeks. I hope with help, I can find a more normal way to live.

I will definitely keep you guys posted on this.

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Postby mac » Fri May 18, 2007 11:18 pm

Trying to connect the dots is indeed frustrating during the process but oh so rewarding when the final line is drawn! I have often given great thought to your situation, wondering what is causing these seizures and gee, never thought about hypoglycemia. I'm just so glad it's not epilepsy.

With your family history, then, it all comes into focus, too. Wish your sister could get away from the alcohol sugar and accept that dreaded chocolate. The thing about the alcohol by this point is it's most likely an addiction. So, she'd have to go thru a program to get freed from that before replacing it with chocolate. I'd rather have a truffle than a drink any ol' day!

hugs, mac

Postby specialmomx2 » Sat May 19, 2007 8:00 am


My sister went through 8 months of rehab. She is very smart and fully understands most of her issues. While she has that understanding; what she lacks is the ability to control herself once that whatever-it-is hits her brain.

If you are interested, I found some interesting stuff on hyperinsulinemic hypoglycemia. ... poglycemia

Check out the link to neuropenia (I think that's how its spelled). Scary to think that I have been dealing with some form of this for probably twelve years or more. I always put the dizzy and tired spells down to stuf like not eating properly (OK. I had a point there), not exercising and working too hard.

Thanks Keesha, Sandy, Caroline and everyone for the support. I am oscillating between elation and fury right now...

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Postby Fraggle Nan » Sat May 19, 2007 8:23 am


I am so happy for you, that you were able to get a diagnosis! And now you will begin to feel better. That is such good news!

I was wondering if I could ask you guys about the conversation on alcoholism in the family and the sugar connection?

I couldn't believe what you guys were talking about-that is me!

I was raised by alcoholic parents, many of my siblings are alcoholics, but for me, I decided I would not live my life that way, but I do consume LARGE quanities of chocolate. What is the connection? What am I missing?

My husband thinks I eat too much chocolate. I will skip dinner for candy. I know that is bad. Is this like alcoholism?

Forgive me for the hyjack, just curious.

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Postby specialmomx2 » Sat May 19, 2007 9:45 am


I don't know about you, but for me the alcohol-chocolate connection is about blood sugar.

Here is an oversimplified view of blood sugar: You sleep at night and don't eat for 8 hours. You wake in the morning and you feel sluggish. This could be because you haven't slept enough. Or it could be because your blood sugar is low. Blood sugar is the amount of glucose in your blood and brain / Central nervous System. Glucose is the main fuel the brain uses to function; so if blood glucose is low, one feels dull and unable to think.

So one starts the day with a typical breakfast: Coffee and something sweet and starchy (cereal, pastries, muffins, etc). The something sweet and starchy will raise your blood sugar. The coffee will kick-start the adrenal glands and some of the other bodily functions to allow digestion to start more quickly and release that sugar into the brain and blood.

Now, We all know that high bood sugar (i.e. Diabetes) is BAD, and that insulin stops high blood sugar from getting too high. Insulin is the body's sugar cop. If blood sugar levels start to creep up, Insulin will patrol the body, picking up that pesky sugar, and converting it to fat to store for later use.

This process works just lovely with most people. They eat a lot of sugar, insulin picks up the excess and addresses any imbaances. And off they go to work, merrily full of caffeine and glucose.

With some people -i.e. me. The insulin cop is a little too enthusiastic about its job. It goes overboard on the sugar cleanup, causing blood sugar levels to become too LOW. This triggers a self-protection mechanism in the body. "Opps! sugar is low! Brain needs fuel. Need. Sugar. NOW.

And so we eat something sweet or we have a nice beer (alcohol is one of the most efficient means to get sugar into the bloodstream). Our blood sugar goes up, too much insulin is released, blood sugar goes down again. Need more chocolate/beer: Blood sugar goes up, Insulin is released, blood sugar goes down again... Repeat ad nauseum.

I's called reactive hypoglycemia (hypoglycemia being the fancy term for low blood sugar) because the body is making itself hypoglycemic in reaction to something. There are numerous causes and -of course- my old friend idiopathic reactive hypoglycemia (note heavy sarcasm).

I hope this makes sense.

OK late for PT, gotta go.

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Postby Fraggle Nan » Sat May 19, 2007 2:41 pm


Wow, I did not know all this. I thought I heard one time the brain processes sugar the same as alcohol, or something like that. Wasn't too sure though.

This is really going to make me think about what I am doing to my body,
thanks for the input.

I hope you are feeling better soon!

Fraggle Nan
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Postby kiminfla » Sat May 19, 2007 3:35 pm

Paula, I always knew you were amazing! SO glad to hear that you're finally getting some answers! I'll be praying that things will improve for you and please do keep us posted as this mystery unfolds...Be blessed! Kim
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