Unofficial Symptoms List ~~

[selmaS]

Ok...we know what most Drs will accept as a chiari symptom...but, we also know we have many more symptoms that r chiari related that fall thru the cracks...lets make a list of all the symptoms not on the Official lists.

[jmcpct]

Has anyone had their vision more blury upon waking?
Thanks,
Jan

[selmaS]

  U r still in the early stages of recovery....it can take up to 2 yrs to heal completely.....don't rush things and yes, u will have symptoms as u heal, that is typical for the process....do not get discouraged...but, u should not feel worse then b4 surgery that can indicate something is wrong....

[martha274]

so for years i thought i was loosing my mind. i was told about 4 years ago i probaly had ms, then again last year, when i was having problems with my memory, and getting disorientated.
so this is a great list, i decided to just cut and paste from others responses, i also added some of my own. i cant believe that this condition carrys so many symptoms!!!!!
i now want to test my children for this, as their peds said there was no guarantee they would not have this problem.
here go the symptoms>>>
before surgery!!!!!!!!!!!
well to begin, i feel like i have forgotten how to spell words!!!!!
-chest pain, i thought it was arthritis!
-sexual dysfunction
- ear pain and fullness
- Pain in scalp and can actually feel like your hair hurts
- Pressure and pain behind eyes, burning eyes!
- Slicing pain in head from back to front usually on one side, like an ice cream headache

- Brain fog~~ feeling like you are in another world and everything is going on around you..causes confusion, word loss, disorientation..you name it!
- Word recall (or lack thereof) forgetting what you are saying right as you are saying it (sort of goes with brain fog above)
- Kaleidoscope vision (blobs of color swirl in front of eyes)
- Seeing strobe lights
- Seeing ghost images (seeing images flash into vision that you previously looked at)
word loss, not able to pronounce a word.(like my brain forgets)
Loss of hearing or you hear somebody talking to you but the words just dont seem to make it to your brain. Somedays i think my kids are talking in another language! ---this is happening to me now after surgery!!!!!!!!!!!!!!
Getting confused and tunnel vision,

[selmaS]

  Hi and welcome to the Chiari forum.

  Many have had symptoms they referred to as tremors ...I still get them at times....I have had surgery, and just a FYI- chiari symptoms do cycle, so the fact ur HA's r better since ur dx is not all that  uncommon, but be advised u should  avoid certain activities to keep from triggering the HA's from flaring....


  Glad to have u join us, sorry for the reason u had to seek us out.

        "selma"

[Melis39]

I never wrote on this before, but I was diagnosed with chiari over the summer.  Since then my headaches have felt a little better, but I have had this terrible shaking sensation in my head and neck and sometime throughout my whole body (especially when I'm laying down to go to sleep).  It's the scariest thing for me and I wish it would go away!  One of my neurologists thought I was crazy when I told him about this symptom..  Hopefully chiari is what is causing it.  It's so scary!

[selmaS]

  Hi...sounds like u may either have a condition known a s raynauds  or POTS....both are related to chiari, and both should be checked, the raynauds is associated with Ehlers-danlos...so that is what u would be tested for, and the POTS would be a LP to check for that....


   "selma"