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.

Hayley often is affected by storms and altitude. She is our little barometer. Gets cranky, sometimes lethargic and emesis, then better. Her NS and others I have talked to have seen, and agree with this effect. The last time she was in the ER, all the nurses said whenever there is a full moon, they get a lot of shunt failures as well. All these forces affect hydraulics, the most powerful force on earth...

I would agree with the "stormers". Megs does that too. She is the crabbiest child when a storm (little or big) is approaching. She is 2, so I also know how you feel about wanting to know what they are feeling and getting no where! Right now if I ask Megan if she has an ouchy she always points to her stomach, even if she just fell and bonked her knee or head, or or or! I would, though, call this time just to make sure... Our ns assured me that lots of his patients see the same storm reaction. Good luck, and I hope he is feeling better after the rain.

Storms do it for Marijke, too. Summer time is the worst, as our part of Texas has near daily afternoon thunder showers in the summer. She gets head-achey and her behavior becomes rather erratic (largely, I suspect, because of the pain). We just dose her up with motrin and hope for the best. . .