Grrrrrr…

This is going to be another frustration-fueled chronic illness post. Not Shadowrun-related at all. Feel free to wander away if you’re not interested; it’s mostly here for me to get it all out in the open.

Going to try to sum this up as best I can: I was dx w/fibromyalgia about 15 yrs ago, and have coasted on that dx (it’s been blamed for any/all symptoms) since then. Fatigue, insomnia, and all over pain are my norm.

January 2015 I started to get horrid headaches. Headaches were previously rare and mild, but now they were 3-5 times a week and severe. Along with the headaches came dizziness. Not true vertigo, but more imbalance and light-headedness. GP says migraines, neuro says “not exactly migraines” because I don’t throw up or miss work. (Lady, I’m emetiphobic and can’t afford to miss work).

Had MRI and CT of brain and c-spine. Only finding was a syrinx at C6-7. Have had tons of blood tests, hearing/vestibular testing, neurological testing, and it’s all come back clean. I was put on verapamil for headaches.

Fast forward to now, 2 years later. Headaches are a bit less frequent, and less severe most of the time. Meanwhile, I re-read the radiology reports and notice mention of the syrinx. Do some research, and discover syringomyelia and it’s chiari connection. Back to the neuro because damnit I’m still having headaches and the dizziness is a 24/7 thing.

I asked about the syrinx, and she told me it is too small to be causing my symptoms. (first MRI report said 1 cm at C6-7). Sends me for another MRI and ups my verpamil dose.

Just got a call from neuro’s office with the MRI results: syrinx is now described as 6mm at C7, no change from 2 yrs ago. Also said cerebellar tonsils were normal.

Now, I know that CSF flow can be blocked even without herniation, and the size of the syrinx does not equal severity of symptoms. I asked neuro about cine MRI and was basically told she doesn’t know of anyone who does that in the area, maybe I could try the local research university, they have a chiari/syringomyelia program.

Headaches and dizziness are not the only symptoms, but I wanted to get the story out first. I will list the big dumb list of symptoms below.

I am incredibly frustrated, in pain, losing hope, and starting to think maybe I am crazy. I don’t know how to go about finding a doctor who will help, or getting a chiari/syringomyelia specialist.

It would seem my options now are to start the process of finding a doctor who will look deeper despite all the “normal” results, or accept that maybe it’s all in my head and/or I’m making shit up. My GP and neruo seem to think it’s all fine and dandy, but I’m miserable. I’m 34 and feel like I’m 80.

I’m pissed off, frustrated, lost, and beginning to think I’m just losing my mind.

Full Symptom List:

  • Headaches (base of skull, radiating into neck/shoulders/behind eyes
  • Dizziness
  • Neck Pain
  • Fatigue
  • Imbalance/Clumsiness
  • Sensitivity to light/sound/smell
  • Painful pressure in head/neck, beginning at base of skull
  • Severe heat intolerance
  • Tinnitus
  • Popping/Cracking in neck when turning head
  • Brain fog/confusion/memory problems
  • Weakness in arms
  • Anxiety
  • Sleep apnea
  • Neck spasms/shooting pain
  • Nausea
  • Other misc: bad gag reflex, tingling/crawling feeling in scalp, tingling in arms/legs/hands/feet, pain behind eyes, tension/pulling sensation in spine, floaters in vision, insomnia, pulsing sound in ears (especially at night), swaying/difficulty walking, hand tremors, poor hand coordination
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