Lots’ of my posts speak to the 26 plus year history of my injury and my chronic pain. Some speak of the NeuroCranial Restructuring procedures that so improved my condition. Some speak about how I was blessed to be able to use music as an on-ramp to at least a semi-normal life. I go on to try and define the remaining pain causing condition and how it affects me. I’ve actually created a database to detail the myriad of different symptoms and the whack-a-mole methods I use to deal with them, but let me assert in this post that, rather than depending on tests to diagnose me, coming up empty-handed, and then treating me like it really doesn’t matter, they should listen to me, and glean as much as they can from my description. I have new suspicions about the physical location and characteristics of my leak. I have no medical knowledge other than my new, very basic understanding of what a CSF Leak involves.
About the symptoms, two recent things are most important.
A few months ago, when the pain got bad at home, I began to use a technique of laying flat, face down at the foot of the bed and letting my head hang over. When not at home, I get on my hands and knees and put my head down to the ground. Anyway, today, I was up milling around all morning and at one point the pain suddenly intensified, so I went in and hung my head off of the end of the bed. Only a few minutes passed and I felt so much less pain, Both the effect of that and the suddenness of the need are definitive, occurring many times a day.
The second factor that seems to provide a bit of triangulation, I’m going to test right now as I write this. I am on a recliner, sitting up too much. I’m going to recline and then try my newest technique. When my condition is getting worse, my vision and my ability to type quickly and accurately are the first to go. I am now as reclined as I can be, still, anything above flat seems to continue the decline. OK, here goes.
This is a bit strange, but I just put my cell phone behind my neck like a stick, propping my head up by pressing a certain place on my neck. I typed that entire last sentence without a type-o. It feels good when it’s in the right spot and I would go so far as to suggest that it has reduced or blocked the leak with direct pressure. I have definitely noticed at times that doing this makes a major difference like a switch going off. It’s hard to hold it, and it’s uncomfortable to have stick poking into your neck BUT, I have actually used it to allow me to finish things on the computer when I couldn’t just in normal configuration. I can only stay this way for a little while and if I overdo, there this big trench in my neck that takes awhile to go away.
This helps to explain things like, I often feel a very heavy, weighty kind of exhaustion and pain when i first go into a grocery store or departments store and start looking down isles and such. I think that my leak is such that it opens and closes more with movements, perhaps sometimes dumping out CSF, I don’t know. Seems like certain positions and movements cause undue amounts of pain. Hard to nail the specifics, but I think the area of most concern at the bottom of my skull, rear, right side or near center.
I also experience variations in my skull and axis structure, often correcting that through a series of adjustments. If it’s ‘locked’ in an uncomfortable stress, it’s worse. I crack my head against walls for relief, rotating against the wall a certain way to affect my very structure. I have attacks of occipital nerve pain, but I address that with a head wizard so don’t wan’t injections, I think those steroid injections can be harmful. You easily hear 10% of what I hear inside my head. All kinds of noises. It all may get much worse, but with a better understanding, all I lack is money and support to try to find answers.
I am still here with the cell phone pressing into my neck. I feel more ‘normal’ like this. It’s quite incredible. Other than the fact I have this slab pressing hard into my neck, i feel better than most times in a chair. Amazing. I could have used this, perhaps, to keep my job when this all first happened, but no. I was busy falling through the safety net.
Brains & Music 