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Old 01-07-2007, 01:17 PM
jimc jimc is offline
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Join Date: Jan 2007
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Waterlover, when we were on the airplane flying to Tahoe, my ear opened up a little and my head felt better. I assume that's because while the plane is pressurized, the pressure is less than on the ground near sea level. I'm sure they only pressurize the airplane as much as they have to for minimum comfort in an effort to save $. Since I also felt better in Tahoe, I'm thinking maybe I should go live in the Himalayas for awhile...

I believe I can tell the difference between the head pains caused by a spinal vs. a cranial leak. For me, the spinal leak feels like someone is squeezing my head in a vise. I could see how some people might describe it as a G force-type feeling or sucking down sensation. When I had the lumbar drain for 5 days, which was the docs' first attempt to fix my head leak, the squeezing pain was pretty unbearable every time they drained me (30cc drained 4x/day). But in the ICU, where they stick you for a lumbar drain, they're happy to give you very strong pain relievers and let you drift off to sleep.

For me, the spinal-induced pain is much sharper than the cranial-induced pain, which for me is a more constant, typical headche-type pain: my head always feels like I just fell down and landed head-first on a sidewalk five minutes ago. But the cranial leak also makes me feel out of it all the time; my concentration is 1/10th what it was when I was healthy.

Here's hoping you stop feeling that sucking feeling soon.

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Old 01-07-2007, 10:02 PM
waterlover waterlover is offline
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Join Date: Dec 2006
Posts: 28


Thanks for your reply and well wishes. I'm six years post two epidural shots....two years in bed, followed by slow recovery each year. Last few years I've been completely functional though still 24/7 head pressure....though this past year has been my best year. I'm still having trouble exercising but my neurologist though can not say 100% I'm not leaking, feels my head pressure is more that my meninge's pain receptors have been "turned on" vs a leak. My head pressure, thankfully, is no longer that "sucking down" feeling but more like a vise around and top of head. I think your descriptions of the different headaches are important descriptions and quite valuable to your physicians.

Anyway, I haven't flown since my leak started.....used to fly regularly. It would be safe to say, I'm terrified.....but am starting to feel better about the whole concept. I started a low dosage of Inderal (beta blocker) and it has helped my head a little. Hopefully, a few successful flights are in the cards this year. By the way, I know of another person with a leak who experienced temporary improvement at higher elevation. Not a bad idea, the Himilayas......or the space shuttle .

Best of luck--Waterlover
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Old 04-23-2007, 10:21 PM
eman eman is offline
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Join Date: Mar 2007
Posts: 103

Hey I just wanted to add some info to this post. Schievink told me that 1 out of 10 leakers (I think he was talkin about spinal only) have a right or a left sided syndrome. I wonder if I have a cranial leak. Most of my symptoms are on my left side, centered around my left ear as well. The can intensify while upright, but also while laying down in certain positions on a pillow. I've only seen what looked like sinus fluid drain out my nose twice, a light yellow... I'm not sure what to think. I'd never had something like that happen before.

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