Chiari Malformation Community
symptoms other than head/neck pain?
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symptoms other than head/neck pain?

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?
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620923_tn?1405964489

  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.
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Avatar_f_tn
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.
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1823499_tn?1370093889
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
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Avatar_f_tn
I understand.
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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