17 year survivor issues!

I have had headaches, fatigue, and an achy / tingly feeling in my body DAILY since my SAH / Clipping which was in 2005.

I should feel grateful that I live a full, life, work, have a family, can exercise , etc, but this is so annoying and I’ve been to several docs (blood work, neurology, scans, etc. etc!) Nothing comes up on tests. The assumption is that once the brain hits the air it’s never the same. Anyone else have this?

Ohh yea, unfortunately, I have ‘this’ too. My first neurosurgery was back in '96, my last was back in '13 and I’ve been on a rollercoaster of symptoms. Some are tolerable, some are manageable and for some I need a dark, quiet room. I’ve seen all sorts of dr’s, had all sorts of test and nothing. They’ve trialled me on all sorts of meds and the final straw was when they gave me psych meds or meds that just messed with the mind.

I’ve learnt that all of the specialist/wizards/professors all have their own opinions, now the closest I came to anything like an answer was from a very young neurologist in a very well respected teaching hospital. She said to me “We still do not know everything about the brain. We’re still learning. We don’t know why 2 people can have the exact same procedure, for the exact same cause and yet have vastly differing outcomes…’ This was the first time EVER that I’d had a neuro admit that as much as they may profess they know it all… …They actually don’t. Maybe it was because she was younger and hadn’t built that hardnose attitude yet, but at that point, on that day I needed to hear that Prior to this I often felt the medicos were questioning my symptoms and questioning my sanity with statements like 'Well, that just can’t be happening…” but it was.

I’ve had CT scans, with and without toner. I’ve 3T MRI scans and everything ‘looks’ fine, but I still have that rollercoaster today. I just try to manage the best way I can for ‘Now’. For example, earlier today I had to take my wife to an appointment. The ‘now’ needed medication, but upon getting home WHACK my symptoms hit me, so I’ve mellowed out, medicated and did very little. I can still feel the remanence of a lingering headache, but the task got completed. I don’t like the headache, but I seem to be more OK if I can justify it ie "I did ‘x,y and z today and that’s why I feel blahhh’. When I can’t justify it I get frustrated (or more frustrated).

Merl from the Modsupport Team