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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?

Mon, Apr. 16th, 2012 10:25 pm (UTC)

I (luckily) don't have too much experience with shunt headaches. First shunt installed when i was 3 days old, second revision at age of 4, 2 more revisions at age 12 (symptoms were massive lethargy, constant headache, sensitivity to light/noise, and lots of vomiting. Had most recent malfunction/revision 4 years ago (age 24), when I started having headaches that manifesting themselves as short bursts of sharp, shooting pain, and loss of vision. Pain/loss of vision would last a second or 2, and then I'd feel totally fine. Saw the doctor on a Tuesday, and walked myself into the ER on the Thursday to have my shunt replaced. (They used totally new hardware since the original shunt is pretty obsolete at this point).

I'm really surprised you have to wait so long for an appointment! I'd definitely call them up and tell them you suspect you're having a shunt malfunction, and see if you can be seen sooner.

Mon, Apr. 16th, 2012 10:26 pm (UTC)

Also, I'd be really careful about taking old/expired meds!

Mon, Sep. 12th, 2016 06:09 pm (UTC)

Ok, ive stumbled on here looking for proof of what has happened to me. I have an arachnoid cyst, very large chiari, normal pressure hydrocephalus and very large ventricles. I was fenestrated ( hole cut in my brain floor) five years ago. For eight weeks i worked away , drinking two cans of caffiene sports drinks per day......thought nothing of it. This past two weeks ive been home and felt really poorly, gradually getting worse. Then it dawned on me, what had changed. I was once put forward to be on a trial where they were going to inject my spinal chord with caffiene ( ultimately my condition ruled me out) but the neuro suggested i drink more caffiene. I scoffed at the time. Two hours ago i drank a can of caffiene sports drink and guess what? I feel great. Hence my looking for answers. I do hope this might help someone.....give it a go.