In November of 2017 I participated in a survey conducted by the Hydrocephalus Association regarding my experiences as a middle-aged adult with hydrocephalus.
Fast forward eighteen months, the information I and others provided resulted in a new area of research for hydrocephalus: feelings of nausea and general malaise as an additional symptom experienced by those with hydrocephalus.
After almost two months of this headache, I think it’s starting to go away. I don’t trust this completely; it’s gone and come back before. However with the help of modern medicine perhaps I’m on the road..
I’ve now had the ongoing headache for 49 days. Not all day every day, but every day for part of the day. It’s not always at the intensity that I want to bore holes in my skull, but this is getting to be all too much.😑
I’ve promised myself I will finish a draft of one of my books by year’s end. I haven’t yet started. Where to find the passion, patience, & persistance.
I’ve had a headache since December tenth. Luckily most days it’s mild. However, for weeks it can be ‘I wish I could rip my scalp of’ viscous. I thought it was an uptick in migraines, or changes in weather, until remedies for those types of headaches didn’t help this headache.
I went to see my nuerosurgeon. (I always giggle as I say this , as though everyone has their own neurosurgeon.) He didn’t like the sound of my headache and ordered an MRI. After looking at the results, he wants to see me in eight weeks.
Five years ago I was seeing him once a year. Four years ago I was seeing him twice a year. Then in 2016 I had two brain surgeries (shunt revisions) to treat my hydrocephalus. I then went to seeing him every six months. Now it’s every two months. This isn’t how technology is supposed to work!
I appears, also that I may have acquired another affliction related to my hydrocephalus. Oh joy.
I’ve rewritten the words of Huey Lewis’ song “I Want a New Drug.” My title is “I Want a New Head.”
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The first one is the one everyone else has. The second one is in charge of my headaches and has a mind of its own!
Since 2013 I’ve had an adjustable shunt, it’s changed me into a walking barometer. Right now the sky is blue and the sun is shining, but I have a weather migraine. Because of these migraines I usually know, with more accuracy than our local tv weather guy, if there’s a thunderstorm approaching.
I’m betting there’s going to be one later today.
My ‘other brain’ is responsible for: regular migraines, which I usually get after eating something on my ‘do not eat-it will give you a migraine’ list. Until recently I couldn’t eat cheese without getting a migraine two days later. However, now I appear to be able to eat most white cheeses? Why only white cheddar and not yellow cheddar? Ask my ‘other brain’. How did I suddenly become able to eat pizza at all (including triggers of cheese, cured meats, etc.)? Why can I eat some pizza and not get a migraine and still get a migraine if I eat others? I’m not in charge of that.
I’ve also suddenly developed a sensitivity to gluten, which by-the-way only exists in wheat, barley and rye. Why can I eat whole barley (as in the rice-looking grain) but not something made from barley? Why can I eat some wheat bread and not others. These gluten headaches appear immediately after I’ve eaten something that offends-you guessed it-my ‘other brain’.
My ‘other brain’ has also decided I can’t lie on the back of my head, or sit in a recliner without getting a headache. I have to put a tiny pillow behind my head while in the recliner, and use a small travel tempur-pedic-like pillow to sleep with. Just the sort of thing you want to deal with while getting a massage, or about to try to meditate your poisonous thoughts away. Apparently the ‘other brain’ doesn’t understand these headaches aren’t relaxing, and they add more to the poisonous thoughts.😒
I don’t think an ‘other brain’- ectomy is available currently, but maybe with the advances in modern medicine, who knows anything can happen. I survived infant viral meningitis, I’m thriving well for someone who acquired hydrocephalus as an infant. I’m actually blessed.😇
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