squirrel!

Only Symptom Is Eds? Anyone Else?

41 posts in this topic

EDS is definitely my main symptom. The one that is the most debilitating for me. I have had SP and HH since childhood so i have gotten used to it and it doesn't bother me that much. Especially since it only happens at night while i am sleeping or during a nap. i understand that some folks have HH while they are awake and doing things. I may have had some sort of cataplexy episodes in the past but it was so subtle it is hard to tell if it really was.

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Livi, I'm too busy to go digging for you on other forums but I have seen it mentioned by others on them.

I experienced the "weak knee" dips for a good four years before I had my first major cataplexy episode. They were momentary and in response to laughter. I thought, at the time, that it was a little weird but also that it was no big deal. Fast forward to a life where I was working 12 hour days and under a great deal of stress...then my sweet Doberman, Taggie, was hit by a car. I got her into the Vet but, when they told me she died on the operating table, I completely collapsed. That was May of '86. Then came the cotton wool for a brain and more collapses. I was diagnosed in July of '86 and put on Ritalin and Tofranil (Imipramine). To say that those drugs just changed my personality would be the understatement of the year. My hubby finally sat me down for "the talk"...said I had to get off the drugs or it was divorce time because I sure as hell wasn't the person he married and he sure as hell knew why. 

Considering that I was never told that you had to wean yourself off that $hit (and maybe they didn't even know that back then), I stopped them cold turkey.

Then came the rebound Cataplexy, fierce and frequent. Sleep paralysis, terrifying H.H and what I call Out of Body experiences...I was a basket case for eighteen months at home. I was exhausted just having a shower. I'd gone from a high achiever to mush in less than two years and I was still toting the 50 pounds that the Tofranil put on.

I didn't feel like me and I didn't look like me. So, I started reading medical books, changed my diet to eliminate triggers for me and started taking regular naps. The BIG breakthrough for me came at a Christmas party in '89. Everyone was smoking, so I picked up a cigarette and lit it. The fog cleared immediately...I mean instantly...and I've been smoking ever since. I have tried to quit a number of times but, every time,  within two days, I start to have trouble speaking, feel floppy and start to have more frequent cataplexy and the dense brain fog settles in.

I've been researching e-cigarettes and am motivated to try them. I'm a little scared...but it won't be the first time.

The short answer...from my personal experience, cataplexy started small and progressed.

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Cataplexy has to involve some kind of muscular weakness -- it's not just brain fog.  When it happens to you, trust me, you'll know it.  When it first happened to me, my hands became so weak they were almost paralyzed for several minutes.  I couldn't move my fingers at all.  I couldn't make a fist.  They weren't numb or frozen or tingly, just incredibly weak -- a complete loss of strength.  That's the best way to describe it.  So I said to myself, okidoki, what was that?  Called my doc ... his response ... "partial atypical cataplexy".  Next, my hands and knees would get weak and my vision would double for a couple of seconds.  So, they MRI'd my brain.  Then came the full cataplexy.  This is not something you want to experience.  I woke up from a nightmare really scared and sat up in my bed -- all of the sudden my arms turned to jello and fell to my sides first, then I fell backwards on to the bed.  Then, I passed out.  There's no way to shrug off something like that.

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Ferret -- ah yes, nicotine can mask cataplexy and EDS.  Try nicorette -- works just as well, and easier on the lungs.  I tried it and unfortunately it didn't work all that well for me, but for others it works.

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Thanks. I have tried Nicorette and The Patch...neither worked for me. It was the same as trying to quit smoking. It must have something to do with the mode of delivery. Fortunately, I have huge lung capacity (from swimming as a kid) and they work perfectly with no sign of damage. Am I lucky? yes. Am I pushing my luck? yes. Is it a worthwhile trade-off? yes. Everybody's different.

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I have general muscle weakness. And I definitely feel a matter of weakness in my muscles under emotional circumstances. But not to the extent of total loss of control. I usually just feel like i have to sit down. 5 yrs ago when my husband proposed to me I was sitting down and tried to stand up. I was so emotional that my legs turned to jello and I my husband had to hold me up. I just figured it was normal. i have always heard the expression "weak in the knees" and on movies they are always telling people to "sit down" before giving bad news so i figured this kind of thing was normal. But when i explained this episode of jello legs and the general muscle weakness to my sleep dr and he dx me with N w C. But I have never had any obvious cataplexy episodes. I consider myself having N without C but I was able to get Xyrem and maybe I wouldn't have had I not been dx as having C.

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Ferret -- ah yes, nicotine can mask cataplexy and EDS.  Try nicorette -- works just as well, and easier on the lungs.  I tried it and unfortunately it didn't work all that well for me, but for others it works.

I picked up an e-cig on Friday.  Never been able to smoke, really hurts my lungs, but vapor works great!

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My doctor told me a story about an old woman who had narcolepsy and cataplexy her entire life but never knew it.  She had smoked since her 20s, and the smoking masked it.  When she quit smoking in her 70s, it hit her like a ton of bricks.  It is the intensity of the emotion that drives the severity of the attack, but my doctor told me that as we get older the cataplexy will become less and less.

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62 -- you're still young!

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62 -- you're still young!

I know that...but you sure made me feel old. :) Anyway, the facetious point I was making was that at what age can I expect my cataplexy to lessen if it gets better as we age. The lady in her 70's that you mentioned didn't outgrow it. And, IMHO, all the drugs that PWN's are taking do nothing but mask symptoms...not just Nicotine.

The Provigil(three months)has helped but I don't know why and I also don't know how long the effect will continue.

There are all kinds of transplants of organs being done...I wonder if it's possible to transplant the brain neurons that produce Orexin...I'm going googling.

Edited to add...well they're trying it in mice. No money for the pharmaceutical companies in a cure though...duh...whatever was I thinking!

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It's not as simple as just orexin though.  While my doc praises Stanford's work in this area (he was taught there), his criticism is that it probably oversimplifies the problem, because the orexins work in conjunction with a bunch of other things.  If it were as simple as that, he said, why are no two narcoleptics the same?  When he said that it left a lasting impression on me.

 

It's neurological damage, and it's different in each of us because of the severity and location of the damage, how the brain adapts to deal with it, and how the damage continues or stops over time.  Think of it as a chain.  If one of the links breaks, the entire chain fails.  That's all orexin is -- one link in a chain.  Those orexin neurons are not all clumped in one place.  They're spread out and their job is to get the other neurons next to them excited.  So you can't just pump a single chemical into the brain like a bucket and expect it to work.  In order to fix the damage, each one of the damaged neurons would have to be cherry picked and replaced.  This is simply not possible with today's technology.

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One possibility might be to convert the histamine neurons.  There have been studies showing an increased numbers of histamine neurons, and lower orexin neurons in the brain.  One study says it's a result, another says it's the cause. 

 

Basically, if the process by which the histamine neurons take the place of orexin neurons could be reversed, well, win.

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The Orexin Histamine link is really interesting to me. The origin seems to be somewhat of a "what came first- the chicken or the egg". Histamine is part of the immune system. The idea of histamine being involved raises some points to ponder for me:

 

- my first full collapse from Cataplexy was around age 9. Starting around age 7, I developed whopping hay-fever. I was constantly sneezing during rag weed season. At the time, the only anti-histamine was Benadryl, which is also sedating. In later years, my seasonal allergies are barely noticeable. But in childhood, I had no allergy to cats and now I am hugely allergic to cats. For me, at least, allergies seem to have been severe and changing.

 

- the onset of severe seasonal allergies and the onset of Cataplexy seems to be closely related in time, for me.

 

- the use of Benadryl seemed to mask the presence of EDS, since it offered a simple explanation. It was either sleepy or sneezy (and both made me grumpy and dopey)

 

Any discussion of this is purely theoretical, so discussing it with a physician seems to be of little value. So, I appreciate being able to offer these thought here.

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I wouldn't doubt for a moment that most, if not all, have some sort of allergy.  N is related to an autoimmune disorder, is it not? 

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