Here I am again…after 2 AM but woke up at 12:30. I had such high hopes of a full night’s sleep. It’s the Noise that now keeps me awake. I've taken to the habit of falling asleep with the TV on, just set the sleep mode for an hour or so, fall asleep and never hear the Noise until I wake up again. Now I’m awake (who knows why) and the Noise has taken over so on with the TV. Maybe I should go back a few weeks to explain the Noise.
My angio w/embolism was scheduled for 10/16 but was unsuccessful due to a bend in the vessel they were trying to block off, it was sort of like a 7 and the tool just couldn't sneak around it. Rather than risk damaging ‘good’ brain cells, the procedure was aborted, rescheduled and mapped further with an MRI along with the CTs I already had. I went in again on 11/13 for another shot at it. This time they were able to reach their goal but not without difficulty or blocking more vessels than they expected. Since ‘I live so far away’ the overnight stay in ICU was extended to two nights in the hospital. My take on this was not the ‘so far away’ but because I was experiencing unexplained numbness in my face, lower arms, lower legs and my vision was screwed up. The first night I got no sleep because monitors alarms all over ICU were going off all night, including mine. If it wasn't my BP going so low, it was my shallow breathing setting off those damn alarms. The Dr promised I would be in a regular room the second night so I could get some sleep. He left some instructions to the nursing staff which included get me up and moving in the afternoon. It’s sort of a blur right now but the ICU had a difficult patient (not me yet) so I was left alone which was ok by me. By late afternoon the numbness was subsiding, but the foley was not yet removed, I was sure it was leaking and I had not been out of bed yet- which was part of the Dr’s orders. I (ME) had to call the nurse in to initiate this. Right before the Dr came back around 7 PM, the nurse informed me no beds were available outside of ICU. I was livid, there was no way I was spending another night in ICU with no sleep! I threatened to check myself out (to which the nurse threatened that the insurance will not pay the bill if I do-is this true?) After ranting at the Dr, his assistant and the nurse, who I must say took it rather well. The Dr made a few calls and I was later moved to that non-existent room. Although they had to wake me every two hours for neuro checks, it was much more restful than ICU. I was release the next day.
Anyway, sorry about the rambling….
Since the procedure, my peripheral vision is further impacted. I already had an appt setup for another vision field test so I’m curious how that will go. But the Noise had gotten worse. Before it was subtle if I was busy, I didn’t notice it but now it is constant. During the day it’s bearable as there’s enough external stimulants to make it oblivious. It is worse at night when it’s really, really quiet; thus the TV.
Does anyone know why this happens and if I can do anything about it? My AVM is in the right occipital lobe. I have not consulted the Dr; my next appt is 12/10 with the neurologist. I can never talk to him outside an appt and he is always booked out several months so I am SOL for now.
Since I always seem to come across so negative, I do want to say that Alma, who placed the IV lines for my angio was excellent-first time I had no bruising. Also no bruising from the Arterial line placed by the anesthesiologist or the two angio sites themselves. When this needs to be done again, I do want this same team in the OR.
Sorry...rambling again.
There's nothing worse than lying in a hospital bed unable to sleep. When my kids were born, I spent six days in a hospital and lost so much sleep that I started hallucinating. I didn't tell the hospital staff, though, because I was afraid they wouldn't let me go home. Get some rest, djs! I hope you feel better soon.
Hi-I read your post and can unfortunately relate to not being able to sleep in a hospital. I was in inpatient for a few months, and had my stats. checked every shift-change-about every4-5 hours…even though I would try to sleep through bp tests, etc., it’s rather difficult when someone is man-handling and velcroing your arm.
I feel for you.
Regarding the noise, sounds like the TV on a timer is effective. Does your TV offer like spa music or something like that? That with a timer via TV might be a winning combo. If not, do you have access to earbuds with an mp3 player that you could listen to something non-confrontational?
What you are describing is probably "bruit". It's the whooshing sound many of us "brainers" experience. It's the sound of the blood pushing through the vessels of your AVM.My AVM was also in my right occipital lobe. I heard that sound all of my life before my bleed. I never knew it wasn't normal so I never asked a doctor about it. The sound actually helped me sleep. I found it comforting. Of course I didn't know I had an AVM. I no longer hear it as my AVM was successfully resected after my bleed. Other noise may help. I use a fan in my room just for some white noise. There are also little machines that mimic water rushing or birds, etc. That might be helpful.
Aye! Yes, hospital stays are horrible! I spent a total of 2 months in Neuro ICU and inpat rehab with (thank goodness) a month at home in between the two months. My second embo attempt was similar to yours, my avm was in a similar location right side between the front lobe and parietal lobe, in that darned little crease where the motor function is so I'm hemiparetic because the rupture fried some of my motor function. That embo was unsuccessful and aborted as well.
You only mention an embo, no crani or GK or anything so I'm guessing it's a bruit and it won't go away. I had mine since I was at least two. I remember telling my mom there was a bug in my ear and a few years later I told her in greater detail what it sounded like (like a heartbeat). She told me everyone has that...they don't lol. One of the things I did to get accustomed to the bruit was to count with it....it created a sort of zen-like situation for me. It became very calming since, like you, at night it was at its loudest and I had no escape from it (inside my head, you know). After my second embo...it was like it pissed off the bruit and it was not so calming anymore. it was very loud and distracting with a sort of static essence to it that frustrated the crap out of me. Once I had the crani and the cracking, popping, and snapping of my skull settling back in place ended I noticed an obscene quiet that was worse than the bruit! There was so little noise that it was louder than the bruit had ever been! Very strange.