Quote:
Originally Posted by Mark in Idaho
gg,
It sounds like you have exhausted most of the diagnostic tests except for a Neuro Psych Assessment and maybe some specialized testing they do at Amen.
But, finding a cause is not likely going to change how you need to manage your symptoms. Low stress living is important. Good sleep is also very important. I take gabapentin to help my brain let go so I can fall asleep. It was a replacement for the benzo I was taking and is much better and does not leave me drowsy the next day. I take 600 mgs and hour or 2 before needing to go to sleep.
I also occupy my mind with mundane thoughts, a movie, YouTube, etc. so I don't get thoughts going that are cognitively stimulating. Quality sleep with all of the stages is very important to helping the brain cleanse and heal from toxic stress.
If you can find a task to do with your hands that is not cognitively stimulating, that can cause good blood flow to the brain without cognitive challenges.
When you say you are 'on the go,' what does that mean ? What is your day like ? What kind of activities do you do ?
Has your doctor suggested trying medical marijuana ? A high CBD low THC strain, Charlotte's Web, Harlequin, maybe AC/DC, or straight CBD oil for sublingual absorption would be worth considering. CBD does not absorb well through the gut so must consume more edibles in many cases. Some find a bit more THC before bed helps with sleep. The therapeutic amount of THC does not cause a high. Getting high can be counter productive because it can cause agitation.
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Thanks for the suggestion of the Amen Clinic. I've also found a brain injury specialist at UCSF -- Gary Abrams -- but, of course, it's difficult to get in to see him.
"On the go" means doctors appointments or therapy (often family therapy -- long story, but family members who are supporting me financially are trying to "psychoanalyze" the cognitive impairments out of me) almost once a day, spending an hour on the phone with the insurance company, an hour doing research on facilities/specialists.
I try to get out for gentle yoga but my slow processing speed makes it hard -- I can't understand instructions quickly enough. On good days I'll venture out for a walk but my problems with visual-spatial orientation and convergence often make that very disorienting.
I used to read a lot but now find that I cannot understand even children's books. I'll look into your suggestion of tactile activities -- maybe puzzles, knitting, etc., as t.v. or movies make me too dizzy.
Re: sleep medications, I'm pretty wary of accepting new drugs from a psychiatrist who is not knowledgeable about brain injury. I'm trying to find a psychotropic specialist but I appreciate the suggestion of gabapentin. I've actually never heard of CBD oil. I once tried smoking and it magnified my symptoms.
What I'm getting from slowly making my way through posts here is that the only thing to do is work on acceptance and modifying one's life towards a somewhat less ambitious tempo. I used to be an extremely active multi-tasker who hated being idle, so clearly I need to reinvent somewhat...I'm not sure if my lack of absolute rest is contributing to my non-recovery, or if that's just the nature of the injury. I spoke with Constance Miller, the founder of the Brain Injury Resource Center, and she was pretty frank about the slight recovery one can expect from the global damage of a hypoxic injury.
In any case, a very heartfelt thanks for answering some of these queries and providing support. It means a lot to one starting off in this wilderness. All my best wishes to you!