For a week and a half or what feels like longer. I've experienced:
Pain behind both eyes.
Pain from shunt valve and distal catheter followed by nausea
Dizziness
Ringing in my right ear
Pain on top of scalp both left and right sides.
Today (5/7) I am feeling better.
Lately, in order to distract myself, I've starting reading various books such as Bunnicula, manga and anything else I can find.
And of course, the Reading Rainbow theme song has been in my head....
May is Stroke Awareness month.
The last few days have been pain free.
Then there was today.
Sometime this afternoon I began feeling the following:
Headache pain the back of my head (from Chiari Malformation)
Nausea from my shunt adjusting itself....
Pressure and pain the forehead
Pain behind both of my eyes.
Pain on both sides of my head.
Pain on the shunt valve and along the distal catheter down the back of my head and into some of my neck.
I took two different pain medications about a hour apart from each other starting around 12pm and then again at 2pm.
Three hours later, I still have head pain.
I attempted Nintendo therapy with Super Mario World (SNES) and was not very successful. Let's just say lots of game overs....I felt compelled to play of course after seeing the film recently.
Maybe it's because the weather is warmer now, satellites, drones, the moon.... whatever else is in the atmosphere that effects these programmable shunt valves many people ( of various ages ) have to deal with....
This week marks nine years brain surgery free and nine years after surviving multiple brain injuries during shunt revision surgery in 2014. It doesn't feel like it's been that long. I feel the shunt all the time now because of the injuries I had to my brain. No two shunts are the same and everyone ( both children and adults ) have different experiences.
I've been into music from some movie soundtracks such as: Iron Eagle (1986) Hercules (1997) This song was playing in the background while I was at the store earlier this week Daft Punk. Made me think of this whole brain birthday celebration I do like every year. Not in reference to having more surgery, obviously.
I made a film about my brain injuries to help spread awareness about brain injury and hydrocephalus it can viewed here. I'm just one of many people who have a shunt.
Many people both adults and children who live with a chronic illness,
unruly medical device and/or chronic pain have various symptoms they
deal with daily. I'm just one of many.
Sounds are bothering me this weekend. I had to put on noise canceling headphones because the sound of cabinet doors closing and radio was hurting my right ear. Since my injuries in 2014, I have some tone issues with that ear as it was bleeding after my injuries.
I took pain reliever in the morning, it reduced my symptoms. They were still lingering even after taking medication.
The rest of the day I still had:
Pain behind both eyes.
Noises from behind my right eye.
Nausea
Pain from the distal catheter in my head and pain from moving my head from side to side.
Pressure in my forehead.
And my left leg crossed over my right leg while I was in the kitchen. I was able to catch myself and avoided landing on the kitchen floor.
Music helped me yesterday and a today to distract me..I'm still waiting for that Powerline Album...
Last month in January, I had the following:
Pain behind my right eye (where I had strabismus surgery) I was told the pain I feel behind one eye or both is not from the surgery I had in 2015. Rather, it's from the internal injuries I had. I also had pain in front of my eye. Felt like a needle was being pushed into it. This is the same pain I've experienced at the top of my head sometimes.
My shunt making self adjustments with a side of nausea. This is better than when it was beeping in 2015 and 2016...I haven't heard any sounds from my shunt since then.
Scissoring issue with my right leg crossing over my left. I didn't fall - I was able to catch myself in time. This is random, as I've mentioned before and happened this morning when I went to turn on a lamp.
Hearing sounds from behind my right eye. I was told this wasn't from my surgery, it's from in the injuries I had.
Right eye drifting issues.
Sometimes pain reliever it helps, other times it doesn't. Depends on where the pain is coming from.
One thing which makes me smile with all this chronic pain nonsense is the soundtrack to Ducktales which encompasses music from both the television series and the nes game Ducktales (1990).
Let's not forget how awesome the music is from Chrono Trigger (1995)
Nintendo therapy with Starfox (1993) was unsuccessful last week - I was having drifting eye and eye focusing issues. You have the point of view of the pilot in this game and there are times when objects are flying towards you quickly plus you have to save your teammates while being attacked by enemies. I was having visual sensory overload - Doesn't usually happen for me with Starfox and I blame atmospheric pressure and brain damage.
I did make a second attempt the following week and only had one game over and was successful in finishing the game on level 1. Of course, this second attempt made me think of a song by Aaliyah.
I'm just one of many people with a shunt, I have my own coping mechanisms. Many children, adults and their families live with chronic pain and chronic illness. Everyone has their own way of coping with this and dealing with pain management.
This yea marks 10 years since I started this blog and began documenting my cerebral shunt's daily activities. At the time, I wasn't aware my shunt was on the wrong side of my brain. I would figure this out on my own while in the neurosurgeon's office in 2014.
More on that later...
My shunt has been behaving itself today. Last week, I had shunt valve and head pain in different parts of my head. Upon taking curamin, the pain on my scalp went away after a few hours. The shunt pain still remained.
No pain behind my eyes over the weekend, which meant I had a little time for the Nintendo game, Snow Bros. Appropriate for the cold weather and the music can get stuck in your head.
I had chiari malformation headache in the back of my head (by my cerebellum) starting at 5am this morning. This was followed by pain on the shunt valve and nausea. My shunt was adjusting itself. I haven't heard it beep since 2015 and 2016 which is a good thing. I'm even more thrilled that it's still working.
I took pain reliever early this morning and mid morning (both times with food) pain was reduced by 60% still lingering in the background. This went on for 6 hours. Pain wasn't completely gone until 4pm.
Today I had double vision issues, where my right eye was drifting and then snapped back to where it was supposed to be. It's disorienting because it's random ( like my balance and walking issues )
Again, it makes me nervous about the thought of having eye surgery again. My eye surgeon told me at the time, there was a chance that I may need surgery again. I'm grateful I haven't needed this yet.
Others things I found helpful to get me through my chronic pain and unruly medical device nonsense has been listening to the soundtrack to Spirited Away.
The holiday Santa (to the left) makes me smile especially on days when I have pain and walking issues.
