i noticed a lot of my symptoms are not necessarily head and neck pain- but weird sensations throughout my body, shortness of breath or internal shakiness, fatigue, general feeling of being unwell, not sleeping well (and occassionally waking up gasping)- how many of you have these as your worst symptoms? does this mean the chiari is more progressed or that the brainstem is compressed?
Hi, if u wake up gasping, call ur Dr asap and make arrangements for a sleep study...Sleep apnea is not uncommon for those with Chiari....
We are all affected differently, so until u see a Chiari specialist to let u know how urs is affecting ur overall health u will have to address these issues individually.
Much of the symptoms u mention can accompany the reg chiari HA and neck pain....and sometimes, they can be so intense u do not notice some symptoms...so, please address ur issue of waking gasping for breath...that is concerning and needs to be dealt with now.
Dysautonomia is a bigger problem for me than pain. I think the particular symptom has to do with which nerve is compressed and/or how much csf is impeded.
To complicate things further, some symptoms seem to be "sensations" (like the feeling of being choked or vibrating), while other sensations are "real"--i.e., measurable (like no gag reflex or Vertigo)
I don't think it's more progressive Chiari; it's probably just the way it manifests in our bodies.
I have the same issues as u. Right now my autonomic dysfunction is out of control. I have no gag reflex either and I'm constantly checkin my phone when its on me cayse I feel mystery vibrations. I've been havun tachycardia bad latly, put on beta blockers. I am only 3 months post op from 2nd surgery aand having anxiety and stress from other dxs isn't helping....I can't explain things to anyone because they think I'm crazy. UGH
Imo, "anxiety" is another one of those sensations. (not that Im a calm person, by any means!). I know what anxiety feels like. But after having a positive tilt table test, & provoked w/adrenaline, I know what ANXIETY feels like. So I have to tell myself that it is my body f'ing up & I am not losing my mind.
A racing heart does NOT feel good, like exercising; it feels more like you're dying, right?
After having 2 panic attacks, 2 nights in a row--for hours, & valium didn't help!--I asked for a Rx for clonazepam. That stuff is really hard to get off of though; at least it was for me.
Im concerned for you changing meds, as that can be another stressor that you don't need right now. But, let's be positive--sounds like a nice rest, no responsibilities! :)
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