a day's musings in the life of a leaker

[guineapig]

quite a level of reported activity, diagnostics and repairs. i feel like we are all siting around a table playing poker. we are all wondering what each others' hands are, wanting everyone to win. but strange, i don't see the face of the dealer (must be a doctor), but everyone else has a face even though i've never seen you.


so, i am now infected w/ the first serious virus since i started spinal leaking in spring of '05. that summer i had a slight head cold for about 48 hours; hardly of much note. this one started in my throat, migrated to chest and is now residing in my sinus and head. it has been about 9 days. the nose wont stop. i think i have all the symptoms of a spinal leaker w/ the benefits of a cranial leaker (rhinorrhea). "benefits"? i've got more snot than i do csf; maybe if i can get the virus to infect my choroid plexus, i'll make mores csf! since i don't blow my nose, an extra challenge: close one nostril, w/ no to little effort exhale thru the nose... "thar she blows!" :o so i wonder now at you nasal leakers... i have to go to two banks, the library and the drug store all within walking distance of a normal human being; 4 kleenex, otta do it? so if i use one kleenex on the way to the first bank...

it was interesting to feel the transition in headache, from intracranial hypotension before the virus hit my head/sinuses to no headache as the head became infected and my nose (and ears) started to pressurize to intracranial hypertension as the infection hit my head and sinus full on. huh, fancy that.
that is what all we spinal leakers need, viral head infections to boost cranial pressure, but just the right amount.

a day in the life of a leaker,
guineapig

[LauraL840]

Funny, DH had the exact SAME experience about a month ago when he got almost the exact same (could have been but we're on opposite sides of the country) virus!

It took him WELL over 2 weeks to be rid of cold, ended up with secondary ear infection and a round of antibiotics. But his HA was almost gone with such an increase in SNOT!

[guineapig]

no, no, Laura, it's more like those borg in the star trek show. all we leakers are connected...

was wondering if you and any other regular non-leaking (not even those leakers who have healed) visitors would try an experiment for me? i want to know if you can create a pressure feeling in your head from a sustained valsalva. for those that don't know, take a deep breath, and whilst holding it bear down with a good but not tremendous amount of force for a good amount of time -say 20 seconds or so. also, don't do this w/ a bent torso or if you have a connective tissue disorder. feel anything in ur head? pressure?

[LauraL840]

Other than my eyes popping outta my head *ack and my ears equalizing, nope .... I didn't 'feel' anything in my head. I did get an increased 'internal pressure' feeling from the neck up. I tried two different types of maneuvers ... whilst holding my breath, closing mouth and pinching nose, I 'forced' air like exhaling and held it for 20 sec. The other maneuver was to just hold breath and bear down. I got the eyes and ears pop with first maneuver and the increased 'internal pressure' sensation with the second maneuver. The 'pressure' sensation was like a rush of blood/heat/pressure feeling if that makes any sense!

At any rate, where'ya going with all this? ... now I FEEL like a guinea pig *yona(LOLOLOL)

[Concerned Gal]

Can definitely relate on noticing the change in csf pressure when I have a cold/sinus issue happening. It feels like my head is twice it's size, pumped up for the world to see!

[guineapig]

yes, yes, "exceelllent, smithers". just what you should have felt. makes good sense. your thoracic pressure was translated to your intracranial pressure (via increased blood pressure, which you described quite well) which you felt in your eyes. i have had eye pain from intracranial hypERtension (too much cranial pressure). just what you were experiencing. although we (leakers) can get headache w/ intracranial hypertension (say due to rebound: leak patched and the brain is making too much csf now and pressure gets too high so ha) but ha in different location (for me it is deeper, just as painful though, different locations: behind eyebrow, behind eye(s), eye(s), mid brain, above throat and mouth... as opposed to the usual hypOtension i feel it top of my head mid line or all over the top of my head (global, like a helmet)). your ears went full via the eustachian tubes. all normal. but it was the eyes, you see. one might would wonder why the eyes would feel the bulge... cause there is more cranial pressure on the back of them... intracranial hypERtension but w/out the ha. and the eyes are more sensitive i suppose to pressure changes.
(i'm thinking about people "seeing red" when angry...)

this is explained better in med literature re csf leaks, but i had not read the part about the eyes feeling like the bulge and the ears feeling full or pop rather... the point of this is, it demonstrates, or puts into action what i understand from my own experience and have read, in someone who is not a leaker or has not leaked. very interesting and gratifying.

during my viral head/sinus infection, when my nose flowed like a river, i would exhale w/ one nostril (other closed) as opposed to "blowing my nose". even though i tried to be careful (little to no force) one time when i had no headache (head/sinus infection was increasing my cranial pressure to normal. normal!:D) i over did it, i could feel the pressure build in my head and that headache w/ characteristics of hypERtension appeared amazingly quick, and soon thereafter subsided.

feeling like a guinea pig ehhh. well then, i guess this qualifies me to ask you to ask the chief to give you a kiss on the cheek for me. that is, with his permission. :)

Other than my eyes popping outta my head *ack and my ears equalizing, nope .... I didn't 'feel' anything in my head. I did get an increased 'internal pressure' feeling from the neck up. I tried two different types of maneuvers ... whilst holding my breath, closing mouth and pinching nose, I 'forced' air like exhaling and held it for 20 sec. The other maneuver was to just hold breath and bear down. I got the eyes and ears pop with first maneuver and the increased 'internal pressure' sensation with the second maneuver. The 'pressure' sensation was like a rush of blood/heat/pressure feeling if that makes any sense!

At any rate, where'ya going with all this? ... now I FEEL like a guinea pig *yona(LOLOLOL)

[LauraL840]

as opposed to the usual hypOtension i feel it top of my head mid line or all over the top of my head (global, like a helmet)


DH describes his HA location like a Jewish Yamulke (skullcap). His HA at lowest level covers that same area and when it cranks up it spreads forward towards his eyes. It's somewhat interesting but I can now (unfortunately) tell what pain level or intensity of pain he's feeling by looking at his eyes; the more 'on fire' they appear, the greater his pain. :(

[nancydrewbr]

My headache (HA) is more like a Parisenian cap worn like / , well not quite that dramatic but you know what I mean. I have it on 24/7 and even wear it to bed. My right side is normal...It's so greatly affected my ear with inflammation, etc? that I cannot equalize pressure, thus making that whole left side feel worse. I have had to go to bed with an ice pack on the left side with a towel.

Time to see the Neurologist...and see what he can do.

Just some thoughts!

[guineapig]

My headache (HA) is more like a Parisenian cap worn like / , well not quite that dramatic but you know what I mean. I have it on 24/7 and even wear it to bed. My right side is normal...It's so greatly affected my ear with inflammation, etc? that I cannot equalize pressure, thus making that whole left side feel worse. I have had to go to bed with an ice pack on the left side with a towel.

Time to see the Neurologist...and see what he can do.

Just some thoughts!

no, no. i don't think a neurologist will do anything for your ha/csf leak; as useless as asprin. neurosurgeon, nancydrewbr, neurosurgeon. what pain meds u using?

ice packs too ehhh. well then. maybe u can use a t-shirt to tie it on. the neck goes around your head w/ shirt above head. tie a knot in the sleeves, maybe on the opposite side of your head.

it would be amazing, but for the serious pain, how the brain interprets icp and creates symptoms one side of the brain or the other, as if the csf flow/creation or meninges are limited in some way that regards.

hmmmmm, so your ha is not turned off by laying down either. text book officially, over time, icp looses its orthostatic nature. i would guess though that the morning is your best time, despite waking up w/ a headache? does walking help? and sometimes, later in the day, the ha can be better, contrary to the usual, yet immature understanding, the the longer one is upright the more the csf drains from the cranium and the more the icp and ha...

[suebear6]

You guys are the best!!!! At least I now know I am not crazy. I have been going to the Cleveland Clinic in Weston, FL for 3 months reporting exactly the same thing to both the neurologist and the ENT--the original headache changes and actually gets better and is replaced by a sinus headache and eye pain while I'm full of mucous.
My original csf headache started with a bad epidural during childbirth in March of 2007. I keep getting either sinusitis or ear infections and never really recover. After the antibiotics I have weeks of draining down the back of my throat until I get the next sinus infection. But each time my sinuses infect the low pressure headache gets better.
Does anyone have or know why it causes stabbing ear pain?
Has anyone experienced what feels like a drop of liquid in their ear (like a carpenter's level) that kind of oozes or shifts? Sometimes it feels more like sliding sand.

[LauraL840]

After the antibiotics I have weeks of draining down the back of my throat until I get the next sinus infection. But each time my sinuses infect the low pressure headache gets better.
Does anyone have or know why it causes stabbing ear pain?
Has anyone experienced what feels like a drop of liquid in their ear (like a carpenter's level) that kind of oozes or shifts? Sometimes it feels more like sliding sand.


Each of those symptoms can apply to one of two TOTALLY DIFFERENT causes!

You could have 1) really crappy sinus/eustachian problems requiring the help of an ENT.

OR .........
(can I have a drum-roll please from someone who's been misdiagnosed?)

You could have 2) a cranial CSF leak.

Personally I'd MUCH rather have crappy sinuses (wait a darn minute, I DO have crappy sinuses ;) ) than a CSF leak (married to the leak) ... but me thinks you need to persuade your doc to do imaging studies to rule out the leak.

If DOC "know-it-all" (cause they all do) doesn't seem concerned, come armed with documentation of how cranial leaks + sinus infections = meningitis....

Educated patients usually get what ALL patients deserve ... appropriate care!

[a real drip]

ice packs too ehhh. well then. maybe u can use a t-shirt to tie it on. the neck goes around your head w/ shirt above head. tie a knot in the sleeves, maybe on the opposite side of your head.


Then have someone take a picture and post it on your flickr/facebook/foto (take your pick) page. :p

(I'm still on narcotic analgesic [down to one type], but I'm finally beginning to feel "better.")