With apologies to Tracy Chapman:

Body's too old to be workin'
Body's too young to be workin' like this

#ChronicIllness #IIH #disability

@spiegelmama
I'm always happy to see validation of this. Some health sites are finally starting to cover it too (https://www.mayoclinic.org/diseases-conditions/pseudotumor-cerebri/symptoms-causes/syc-20354031) but I'm still frustrated that Ehlers Danlos still is "too rare" for physicians to link it to at least some of the cases. Chiari Malformation is even "more rare"

I really hope the visibility of all these "rare" conditions increase and the wider medical community starts connecting the dots so that all of us can stop having to fight and actually get the research and treatment we need.

#IIH #IdiopathicIntracranialHypertension #ChronicIllness

@spiegelmama
Auditory is a weird one for me.... There were times that I could have swore I was hearing music that wasn't there but over time I've come to realize a few things. First is I've found that sometimes I'm far more prone to hear background tracks in TV shows and movies. For me I never had realized how much atmospheric sounds are added to movies and TV shows because I never heard it before. Honestly I never realized this until one time I was high watching a TV show I watched over and over again and noticed it.... It matched some of what I thought I was hearing before. The second thing I noticed is that my brain has a habit of "filling in the blanks" where I hear something at a super low volume... Even as much as a slight air sound (like a draft or something) but my brain tries to interpret it and I process it as music.

#ComplexAuditoryHallucinations #AuditoryCharlesBonnet #IntracranialHypertension #IIH #IdiopathicIntracranialHypertension #ChronicIllness #Disability

@spiegelmama
To be fair though if you only properly evaluate 2 in 100,000 then that's actually 100%

There is a really good chance that a high percentage of people with "run of the mill" migraines are actually linked to this but are never evaluated because.... "It's so rare"

The thing that you need to be extremely thankful for, and where you *are* a rare case (whether or not the condition is rare or not) is that you were diagnosed and have doctors that are looking in the right place. Most people don't have that luxury.

I'm kind of glad I got behind on mastodon and read your post today because I need to remember that there are a few things I can be thankful for on Thanksgiving and if being a diagnosed zebra is it then I should hold on to that.

Happy Thanksgiving

#IIH #MG #Zebra

I’m at a Neurology appointment today. It’s just a followup, if memory serves correctly, but I believe we’ll be talking about medication. He’s going to have me start doing injection therapy for migraines and then slowly wean off of one of the daily pills I take. I’m not thrilled about the prospect of the injections, but the way he described it doesn’t make it sound too invasive.

I’m actually in a waiting room right now. Just passing the time by writing this. I keep seeing recommendations every day in order to get better at writing. I won’t be doing it every day. My life isn’t so interesting. But I will try to write a bit more about what’s on my mind in a cathartic sense instead of bugging random people on Discord about it or just letting these thoughts stew in my head.

These writings won’t be revised. They are not short stories, blog posts, or articles. They will contain errors, repeated phrases and clunky writing mechanics. That’s okay. The purpose of this is to better hone my “off-the-cuff” writing ability in order to increase my first draft production abilities. (Take note: the previous clunky sentence is something I would spend several minutes trying to rework during the first draft stage, when really it’s something that should be left to the revision stage).

My ability to “just write” is rather poor. I sit down at a computer and struggle to think about what to type. I hem and haw over how to begin a scene, start typing, go back and erase things and start over. Part of me says this is okay. As I’m writing, I have a much better idea how how the scene is set or how an event plays out and instead of waiting until the revision stage to make a correction that needs to be made earlier in the piece, doing it right then will save me some confusion and a possible overlook inconsistency in my writing. However, I make very little progress this way and it’s part of the reason I don’t write as much as I do.

But this isn’t about revision. This is purely about getting words into a document and then probably up onto my blog. I don’t expect anyone to actually read it, as nobody reads my blog unless I have a new Dragon Quest guide up. That’s okay. I post this sort of thing there mainly as a repository in case I want or need to share a piece of writing with a friend for a critique.

The previous paragraph should illustrate another problem of mine. I get distracted by tangents too easily. I started that paragraph continuing the discussion on revisions and first drafts and began discussing my blog. Is that okay? Perhaps the topic of writing has expired by now anyway.

***

My Neurology appointment went well enough. It was short. He mainly just checked my vision and asked about my headaches. I have a borderline condition called IIH (Idiopathic Intracranial Hypertension), where the pressure of CFC fluid in my spinal column is slightly more elevated than the average. Basically the condition means you have more spinal fluid than normal and the pressure of extra fluid pushes on the backs of your eyeballs, compressing your optic nerves, causing headaches. If the pressure is high enough, the migraines become rather incapacitating and the damage the optic nerve could eventually lead to blindness.

As I said, my condition is borderline, at worst. The eyecare specialist I saw said she hesitates to say I even have IIH, but since I am borderline and I do have the symptom of severe, often incapacitating headaches, they are treating me as though I have the condition. (run-on sentences much?)

I’m on several different medications to treat the headaches, the latest of which has been causing a bit of brain-fog. The current goal is to switch me over to monthly injection therapy and the titrate off the brain-fog inducing medication (yay).

For the pressure itself, there’s really no treatment. Long ago, in the past they wouldntreat patients by doing weekly spinal taps to drain excess CFC fluid from the spinal column, believing that eventually the body would recognize the lower amount of fluid and “adapt” to that level. The practice isn’t as common anymore, but reading online one can see that it hasn’t fallen completely out of favor. I had to have an initial spinal tap to be diagnosed with the condition and, while the actually procedure wasn’t significantly painful, the recovery wasn’t sunshine and roses.

They now recommend weight loss. Reportedly extra weight around the neck can increase pressure in that area? But I’m not that heavy; and losing extra weight, even with adding exercise to my routine, has been difficult.

***

This was my first attempt at this journaling thing. We’ll just see how it goes. One thing I should really attempt to do is cut way down on the usage of adjectives like “really”, “actually”, and “just”. If I can just eliminate a lot of those in the first draft stage, that would be really awesome.

https://proquestinations.com/ponderings-in-the-neurologists-office/

#headaches #iih #journaling #migraine #RealLife #writing