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specialmomx2
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Paula's Profile

Don't think I can write all this in one sitting but here goes:

The first time I remember mentioning to a doctor that I seemed to have an unusually strange reaction after I eat a large meal was about 14 years ago in about 1994. He poo-poed my concerns -said everyone feels like that, so I sucked it up for years.

But it kept getting worse. It escalated from feeling tired and sluggish to down right sleepiness bordering on narcolepsy.

To avoid being fired I simply didn't eat lunch or breakfast. instead I woudl graze of tiny morsels of food throughout the day and come home, cook finner for the children, put them to bed, cook dinner for the adults, eat, then pass out (and it was more like passing out than sleeping. It was a very unnatural sleep).

I experimented with diet for this and for other reasons such as weight loss. I tried gluten free, low carb, yeast free, elimination diets, and I can't even remember half of them.

I discovered that low carb seemed to work best for me, but I didn't understand why. However, as a working mom, I had a hard tme sticking to a low carb diet. If I broke it, I had a rebound effect that was twice as bad as before I started.

But everyone went through this, right? That was what the doctor said. But I looked at other people; at my colleagues, friends and husband, and they did not seem to have the metabolic issues that I had.

By 2004/2005 thigs were getting bad. My ADHD symptoms were through the roof: It is 10 steps from the dining table to the kitchen. I could not hold a thought in those 10 steps. My son, who was about 7 at the time and is autistic, learned to listen for my steps falter in the kitchen and the remind me what it was I had gone to get: "Ketchup, Mom"; "Juice, mom"; "Salt, mom"; I went to my neurologist (I had started seeing one for migrainse in may '05) and asked if I coudl be formally evaluated for ADHD.

I was and I started on Adderall which is a stimulant used to treat ADHD. It helped enormously. It helped the fatigue, It suppressed my appetite, which helped the food issue. I simply stopped eating during the day, so I didn't have the food effect, but didn't feel exhausted all the time. I remembered the juice, ketchup and salt...

But I became very cranky and irritable.

Also things were changing: The sleepy spells changed to dizzy spells with other stuff going on too: vision disturbances, floaters, strange headaches: icepick headaches, thunderclap headaches, "sunglassess headaches", the "crawly thing in the left temple" headache. There ws nothing in the documentation about these odd headaches.

Or about the hand atrophy.

In April '06 I fell in Penn Station. My right leg just gave out and it was a "yard sale" wipeout: my purse opened and my phone, palmpilot, wallet, keys and sundry objects went flying. luckily some good Samaritans helped me out, and I got home OK. Most of them blamed y heels, but you know; that hadn't been it. I have worn ridiculous shoes forever and they have not been a problem.

My knee felt 'funny' after that fall so I went to see an orthapedist. That was a laugh: he asked me what was wrong:

"it doesn't feel stable. It feels like it wants to go backwards too far"

"Let me see ....Good Grief! It *is* going back too far"

"No it isn't! The other one is the same. Look!"

"Good grief! Let me see your other joints..."
(he wiggled some fingers, wrists elbows and shoulders) You shouldn't be able to do all that. Have you got Ehler's Danlos Syndrome?"

"have I got WHAT?"

"Nevermind. If you had it you would know about it by now..."

So I went back to the office and Googled EDS. I read about the vascular form, and knowing that my mom had died at 36yo of a ruptured blood vessel in her brain- sent a somewhat panicked note to my PCP.

Tired. Will continue this tomorrow...

-Paula

6/14/2008, 9:36 pm

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horseshadowrider
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Paula, this is interesting stuff! I don't think I'd heard before about how this all began for you! I'm glad you are doing in parts so that you won't feel the need to skip parts of the story to shorten it.

I'm reading with rapt attention! Can't wait for the next installment. When it gets to the part where your shoulder pops out of joint, I can actually say, I have seen that one in person!!

hugs and love
Virginia

---
Virginia
4 plc fracture of the C1, Tethered Cord, (acquired chiari and elongated brainstem resolved by Tethered Cord surgery); atlanto occipital dislocation and cranial settling all due to equestrian accident,
2004. CC Fusion upcoming.

6/15/2008, 12:36 am

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horseshadowrider
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Paula, you wrote: "then pass out (and it was more like passing out than sleeping. It was a very unnatural sleep)."

I am interested in this. I seem to have this. I describe it here: http://jeffersonfracture.blogspot.com/2007/10/forced-down-dark-hallway.html

(that's the easiest way for me to let you know...)

yesterday, I was sitting in the doctor's office waiting room waiting for my dh who was in the with the doc, it was a small office, I was visiting with the secretary and I went right to sleep in the midst of the conversation!

I did post on this at cci and found another gal who had this and interestingly, she also was post traumatic and had suffered MTBI.

Would you say what I described is anything like the "unnatural" sleep you remember?

love ya galfriend!

6/15/2008, 12:45 am

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specialmomx2
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Hmmmm.

Virginia, have you ever had an EEG to test for epilepsy? Because, honestly those episodes sound very similar mine. Particularly mine on Lyrica, which was about as bad as the fits ever got for me (i.e. ICU bad!)

I know the jury is out on epilepsy for me. However, my first epileptologist, who observed a fit live in real time while I was all hooked up to an EEG monitor, later saw a recording of my brainwaves during one of these "sleep" episodes (on the same 48hr recording). He said that the "sleep" event and the "shaky" event -although they presented differently clinically, looked identical on EEG.

My 'sleep' episodes come on very suddenly. Theyu are usually preceded by blurry vision, a feeling of slight nausea, "gloves and socks" tingling in the hands and feet (as opposed to the "lines and points" -type tingling you get with trapped or irritated nerves). Then comes the pounding (but not overly fast) heartbeat, and the NEED to lie down, NOW. Then I fall into a disturbed and fitful sleep, from which is is difficult, and almost dangerous to wake me (extremly grumpy and cranky and loathe to waken).

While asleep, I still feel very unwell. I feel tense rather than relaxed, my hearing does not shut down completely. Whatever is on the telly or radio will invade my disturbed and vivid dreams and I often wake feeling tired, stiff and almost hungover.

These "naps" generally last for two hours at a minimum, and have been five hours.

-Paula

6/15/2008, 9:44 am

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horseshadowrider
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Paula, that helps. Some of that sounds like what I have, but some not...it never lasts more than a minute or two. Do you go immediately, that split second, into a dream? That's what I do.

I will try to look for more warning signs.The vision thing could be happening as a precursor...the slight nausea yes... i often have pain in my hands and feet, in fact, almost all the time, so will try to see if it's more pronounced or whatever.

I'm SOOOO glad that you have the warning with the need to LIE DOWN NOW! At least, that is a Gift! I know you've been looking for the triggers, food, stress or whatever.
Have you ever thought about posture or head position as a trigger? For me, it definitely is the posture, the head crunching back. I wonder about you, now that I think about it...hmmmm.

thanks so much..now, I'm wanting to hear the "rest of the story!"

loveya

6/15/2008, 12:07 pm

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