Wow, hasn’t this site grown. I haven’t been on her for a while. I’m now about 15 months since my bleed and about 7 months since gamma knife treatment. I’m slowly plodding on with life. I do it all at my own pace these days. I haven’t really had any problems at all with side effects from my treatment. Just a headache on and off (I had that before treatment), still have the hallucinations (Usually I just live with them. Occasionally they get me down a bit), still have low energy, but definitely improved since this time last year (I just returned from a camping trip, and managed to help put the tent up and help take it down this year). I’m fully functioning at work again, and about to hit my 40th birthday (15 months ago thought I wouldn’t see it). To anyone out there who’s struggling coming to terms with this AVM thing - life will move on whether you want it to or not, just hang on in there.
I’m also nearly 15 months since my bleed and also about to turn 40. I’m just starting to get those days when I really struggle with this whole thing. I have a question for you though. About your hallucinations. You say you see “shadows” of people, or something to that effect. I think I have something similar, drives me insane! When I try to go to sleep at night, when I close my eyes I can still “see” what is around me, kind of like in shadows. So then I have to open my eyes to try to determine if I’m seeing it or if I’m not. I have the hardest time sleeping because I have to keep opening my eyes. Does that sound like anything that you’ve experienced? Congratulations also on your recent wedding. And yes, we all must hang in there!
Are you on any meds? I had hallucinations last year and the doctors told me it was because I was depressed. Which WASN’T true. Then they took me off of some of the meds I was on and the hallucinations went away. I was even hospitalized from the hallucinations and my blood pressure kept dropping. Have you talked it over with your doctors about them?I am assuming so…I know they suck and I have only had them one time in my entire life and it was for less than a week. But it was AWFUL!!! Congrats on the 15 months since treatment
Apparently the hallucinations are normal (so my neuro specialist tells me). I have two very different types of hallucination. I see shadows on my right side of my vision, but also spiders (which are not at all like shadows). What I see sounds a bit like what you are seeing Trish, but I see them when I’m awake in the area where I no longer have eyesight, as well as when I’m asleep. I don’t see them to such a great extent when I’m asleep, but it never really goes away. My neuro specialist says that my brain is making up it’s own phenomena in the part of my sight that’s no longer there (my bleed was in my occipital lobe), and tells me that as I get older the hallucinations should settle down. Ha ha, at nearly 40 how old to I have to get?? I’m not wishing my life away. I also have problems sleeping because of this visual stuff. I’m only on meds for my blood pressure. I’m still learning to live with all of this - today I’m quite happy with my lot and see myself as being lucky compared to some people on this site who have a lot worse to deal with. Tomorow I might be completely down or angry with the world. I’m definitely getting more happy content days than I did 15 months ago, so that’s an improvement. I try to take each day as it comes, and nowadays make the occasional plan for the future again.