Hi!
My son is Gavin, shunted for hydrocephalus at 1 week old due to IVHs, has been getting occasional headaches (maybe 5 or 6 since he turned three), I think I am noticing they happen when we have storms passing through. Sometimes he vomits. I don't 'feel' like there's any valve or clog problem, because he's unhappy for a few hours then just fine again. Is this normal? Could he have a migraine? Is it caused by the storm's low pressure? Should I call the NS? Does tylenol help? Any other med help?

Gavin's mom (Jen)

Hey, Jen.

Yep, that's exactly what it is. Very normal; no need to call the nsg. The shunt acts like a barometer, and when there is a wild pressure change (or even a small one, depending on the individual patient's sensitivity), the result is often sudden, severe headache, with or without vomitting. I had them for years and now I get simple partial seizures from them. Give me the headaches any day.

My experience is that Tylenol does absolutely nothing. I don't take it for any kind of pain anymore, just fever (for which it's the best stuff in the house). The best thing to do is to have him lie down on his shunt side for about an hour or so. This helps to equalize the gravity and level the pressure.


LIZARD, comin' up on 40 years ( ) of living with hydro

Because it is new, and we do not know your son as good as you . . . I would call the NS just to get checked and error on the side of caution.

Plus it might put your mommy heart a little more at ease. There are many NSs that do not believe in the whole weather-related shunt problems. Most do not experience this so there is little support for it.

I am absolutely not saying it doesn't exist though!

I would call if it were Becca - especially to the point of vomitting.

Hugs,
Kathleen

I gotta tell ya...I am so glad my nsg isn't one of these, but this attitude really ticks me off. I think it's actually fair to say that most of us have some reaction to the change in pressure, although it depends largely on the individual person, as well as type and severity of the hydro.

Kathleen is right; call the nsg if you think it will reassure you, but if it stops once the weather has passed, that's likely all it is.


LIZARD

I'll see how he feels in the morning. He seems fine now, and it is raining. This is all so confusing, lol! Especially trying to get a three year old to tell me how he truly feels!
How would you describe a weather related headache, Liz? I *think* he was trying to tell me it hurt in the center of his forhead....
Jen

It can vary a lot. I used to have anything from forehead pain to a sinus-like pain or pain behind the eyes, to a lower back pain to a localized, dull pain in the valve itself. I do occasionally still get the valve pain. In the case of severe pressure change, I wouldn't be able to stand up for long. Lying down helped a lot.

I can relate to your frustration over not knowing what's going on inside his head, too. My 12 yo son has Chiari and autism, and if he had head or neck pain, it would be hard to know unless it was really severe, I think.


I hope this helps some.

LIZARD

Hey

Thanks for writing me, I would call the neurosurgeon, just to make sure he doesn't need a CT scan or anything.

Forgive me if anything I post in this reply repeats information from others. For several years I have noticed that my HA activity worsens each fall season as early as August lasting until late november. it also seems to follow barometric pressures both high and low seem to trigger HA activity.

In addition: Last summer on the 4th of July my programmable shunt was actually scrambled when a lighten strike came down very near me. I was not struck directly but the ground strike was so close that it fried the transformers and surrounded me and others near me in a blinding white/yellow flash of light that was simultaneous with the thunder clap. It actaully moved my setting, jamming it between 2 settings. So most assuredly I do know that weather force can have some affect on our shunts; the only question is how much.

BTW--luckily the shunt was able to be reset without replacement though at first it looked like a surgery situation.

WOW! A lightening strike that close to you.... I would have been petrified! That is interesting though, something I had NEVER thought of!

Wow...that's crazy. I just had a programmable put in August 18th. Medtronic Strata. Before now, I never noticed any kind of headache with weather changes, I just had headaches ALL the time. Now, I have practically no headaches, but I do notice I start feeling it some with storms that come in...I know that's all it is because as soon as it passes, I get better. Rather annoying, but as long as it's not an everyday occurance...

Anyone have any headache/shunt issues with SNOWSTORMS? I'm from Wisconsin and kind of leary about the winter coming....