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Mon, May. 14th, 2012, 01:10 pm
jspurlin: Low-(CSF)-pressure headaches

Finally went to the neurologist at the Headache Clinic here.

As referenced in the last entry, I've been having these ridiculously painful headaches.

They've basically gone away, but I went to the neurologist anyway, since it took a month and a half to get in.

Figured out what it was: "Low-pressure headache", caused by a periodically low level of CSF in my skull. It was mainly caused when I stood up quickly, or went from a prone position to standing -- major changes in body position and elevation.

Turns out that having a cup of coffee in the morning (a sorta big cup, but not a fuill pot, or anything) keeps it at bay, for me. when I was having the headaches super-often, I wasn't drinking much coffee; then the day I had some I didn't get a headache. Yay, data collection.

Likely issue is that the position change is allowing CSF to siphon down my shunt, and *pow*, GIANT HEADACHE that lasts 30-60 seconds and goes away as the CSF regulates itself.

Apparently the brain has no pain nerves, but the meninges do definitely have them, and the *bonk* of my brain into the bottom of my head may be the cause of the pain.

Recommendations were to wear a "Compressive Band" (one of those big velcro strap 'girdle' type things, I think) on my stomach area if I was going to be doing a bunch of up-and-down movements (playing with my son on the floor, etc), to maintain higher peritoneal pressure, a little. Also, a cup of coffee in the morning seems to keep the headaches at bay, and the neurologist had no issues with me having a normal amount of caffeine.

Simplest suggestion was to get up slightly slower. Seems to be working, overall.

Everything seems to be under control, now, but I figured I'd share an update. Thanks, y'all.

EDIT: also -- the previous headaches I had -- that were able to be solved with Diamox (acetazolimide) -- those were high-pressure headaches. Too much CSF. This was the other extreme.

Luckily, nobody wants to touch my shunt while it's still functioning correctly, and so... we watch things.

Mon, Apr. 16th, 2012, 12:56 pm
jspurlin: Odd symptoms -- shunt malfunction?

I've been pretty miraculously lucky with my shunt, but I think I miiiiight be having the beginnings of a malfunction.

For about the last couple weeks, I've been getting wicked headaches that last a few minutes. Pressure on my forehead, pressure on the back of my eyeballs, I can hear my pulse in my ears (same as with fluid buildup from an ear infection), sometimes I get a weird tension in my shoulders. Not confidence inspiring. I'm not excited.

Quick backstory:
Shunt first put in when I was 9 months old, that one was good for 14+ years. Revised when I was 15, I'm 31 now. Revision was just the distal section, I still have the same big-gung-ho-1980s ventricular catheter.

In 2008, there was this stretch of headaches that went on for like, two months.

Headache specialist in 2008 put me on Diamox (acetazolamide) for a short time; that almost instantly fixed it. Headaches vanished within probably 36 hours after the first dose. (side effect is kidney stones; ridiculously painful. Also, carbonated beverages taste LIKE HELL ON TOAST) -- So I never finished them. Kidney stones large enough to have sedimentary stripes in them are right out.

I still had some of the pills left over from the last time (October 2008) and tried that on my own. No effect this time -- just the bad taste from carbonated beverages -- no effect on the headaches.

Advil or Tylenol handle it, but I don't want to take painkillers for something that is a new thing.

My appointment with Neurology is on May 10th. WHAT THE HELL. four weeks?

thoughts? What symptoms do y'all get with your shunt headaches?

Thu, Mar. 22nd, 2012, 03:34 pm
midknight_starr: Help Me to help others

Help Me to help others
by ~RoseDragonGuardian92 on deviantART

This is from my son, Jonathan, for Hydrocephalus Awareness.

Wed, Jan. 4th, 2012, 12:51 pm
fairyprinces: Fertility

I hope everyone is doing well in the new year and feeling healthy. I have to say I haven't had many issues in recent years thank goodness for that. My last shunt malfunction was in '09 when my shunt was switch completely from a VP to a VA. My question for all of you is about fertility.

I was recently married to the most amazing man in September. We both dream of having a family. I was wondering if any of you had experienced fertility issues because of your Hydrocephalus and or shunts. My only fear is the amount of scar tissue I have in my stomach do to surgeries when I had the VP shunt.

If all of you could please tell me your experiences good or bad it would be greatly appreciated. Thank you so much.

Halie Marie

Thu, Feb. 3rd, 2011, 10:29 pm
brokensiren: Hi!

Just wanted to poke my head in since the community has been quiet. How's everyone been doing? I know I haven't been posting much in awhile, but I'm always here if you guys need me. :)

Fri, Apr. 16th, 2010, 11:04 am
nightshade1972: Information on Health Reform Law

For community members in the US, courtesy of my husband:

Claimants and some beneficiaries of Social Security
and SSI disability benefits will be impacted by the recent
health care reform legislation, the “Patient Protection
and Affordable Care Act,” which was signed
into law by President Obama on March 23, 2010. A
good source for information about the law is available
on the Kaiser Family Foundation health reform website,
http://healthreform.kff.org/. Two useful documents
are: (1) Summary of New Health Reform Law,
www.kff.org/healthreform/8061.cfm; and (2) Health
Reform Implementation Timeline, www.kff.org/

Tue, Mar. 23rd, 2010, 11:45 pm
nightshade1972: 2010 HydroAssoc Conference

We registered for the conference itself a while ago. This evening, after much convincing the hotel website I only wanted to book *one* set of rooms, not two, the hotel is finally taken care of. Free parking, so if we decide to shell out the bucks for a rental car for three days, at least there won't be that additional expense.

Conference info is here:


Hubby's waiting to see if we can manage to pull off two free round trip airline tix based on his miles.

Hope to see some of you there!

Tue, Dec. 8th, 2009, 03:05 pm
violet_tigress1: Success! And possibly further proof that doctors do not read histories

My Neurosurgeon's office in CA called me back & said the doctor wanted to see me. The receptionist at the office of my Neuro up here wanted me to call my GP. Yes, I know doctors view hiccups as a frivolous thing & that neuro had only seen me once, but still... He's talked to my other neuro & supposedly has my history)

Anyway I have an appointment with my neuro in CA on the 22nd. Now I just have too keep that flight reservation I made.

Tue, Aug. 18th, 2009, 04:57 pm
violet_tigress1: Getting hungry

When you get hungry, do you usually feel hungry? You know, that rumbling in the tummy, empty belly feeling... Or do you skip all that & go straight to being cranky, light headed, maybe slightly dizzy/nauseous & not thinking clearly?

I actually only really feel hungry part of the time, when I get hungry. Usually I get cranky & light heade before I feel hungry. Funny, I don't remember always feeling like that.... I have an appointment with my GP on Friday morning, but I wanted to see if anyone else was the same way.

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