Severe high elevation headaches - must come back to sea level
 

Hi Everyone,
Some of you may know me as 1Lily over on Braintalk. It has been FOREVER since I've been on a forum....I had to run away from my illnesses for a while, even though they didn't leave me alone - I just needed a neurosurgeon break after 6 years of constant neurosurgery, and left all of the forums behind too, I just needed to breathe....
Anyway, I recently had to get in touch with my NEW neurosurgeon, (my prior one became ill with a chronic disease - there is no justice to life sometimes), to get checked on my shunt pressure.
So I asked him about the severe, I mean SEVERE, non-positional, hold-your-head-in-your-arms-and-moan headaches that I get at high elevations (5,000+ft, I live at sea level), and he said that he has never heard of such a thing and that if there was such as syndrome that it could even be recordable, (meaning write about it?) but that maybe it is something better discussed with my primary care doc and dealt with with sumatriptans or diamox or calcium channel blockers......
So........Could I get some feedback - who here also has a problem with elevation, and would you mind sharing a bit about your response to it? For instance, I also get something my husband has labeled "hypersomnia", meaning that I seem to just sleep alll of the time - much more than a normal person would, while I am up there. That has got to mean that my brain is being affected somehow.
Anyway, tell me what you can....
And, HI EVERYONE!!!!! SORRY FOR BEING GONE FOR SO LONG!!!! :grouphug:
Lily