Chiari Malformation Community
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620923 tn?1452915648

Unofficial Symptoms List ~~

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.
210 Responses
1041839 tn?1278681846
Ok, You're trying to make me remember what's on the regular list!? Lol

Mine and carolyn's crazy legs!
620923 tn?1452915648
Look at the Links thread and we do have a symptoms list u can look at...lol....
620923 tn?1452915648
Thanks Selma but I cannot access these links.   Your efforts are so appreciated!!!!!
Hi...I am sorry, but the MedHelp site has changed since the time when we had Health Pages for reference....so they no longer exsist.....but the info is stil out there.....in fact there should be anothter  thread that includes the Unofficial Symptoms list, and if you continue to read comments below you will see many were added right to this one.
1179332 tn?1297478990
Ok..so I've come prepared!! :)

Mine are for Chiari...

Head stuff
- brain shaking feeling
- ear pain and fullness
- Pain in scalp and can actually feel like your hair hurts
- Facial pain!! Everywhere, cheeks, jaw, temples, around eyes, under jaw
- Pressure and pain behind eyes, burning eyes!
- Sharp shooting pains in face (randomly)
- Slicing pain in head from back to front usually on one side, like an ice cream headache
- Feeling like you have cobwebs on your nose and face
- 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)
- Vision jumping, jerking, rocking or bulging (sometimes all at once!)
- Hearing your pulse in your ears

Limb stuff
- Zapping electric feeling in fingers and toes
- Weakness in muscles when SUSTAINING a movement (have trouble brushing teeth, brushing hair ect.)
- Muscle jerks and muscle twitches (constant and all over)
- Spastic, stiff gait with legs that have a mind of their own!!
- Painfully tingling, weak feet that swell
- Weak grip with hands that don't function like they should..like to overshoot at times
- Loose unstable joints

Other body stuff
- Weird vibrations in joints like a cell phone buzzing
- All over total body vibrating..especially when tired
- Constant feeling of rocking
- Feeling "ants crawling on skin" across shoulder blades and from feet up my legs
- Weirds spasms in throat and chest..buzzing and crackling feeling in chest

Well that's all I can think of for now....lol...I'm sure there is more!

620923 tn?1452915648
Thanks Carolyn....u were ready for this ..huh?...lol.....
999891 tn?1407276076
Skin rash on hands back and chest.
1179332 tn?1297478990
Yeah...well I started and they just kept coming...

I remember b4 I found this group I would goggle these things trying to figure out what was going on with me and I couldn't really find anything (especially for the vision stuff and the vibrating). So...I'm hoping that when someone else does, it will bring them here.

What do you think about putting this all together when the thread is done as a list on the health links?
im 63 female and 5 years prior a syrinx got in my brain, the pain brought me to the hospital after screaming in bed all morning, the worst1  I think they drilled a small hole in temple area I just remember screaming 'cannabis' on the gurnee and woke up.  It was like super Mario bros was up in brain on a tiny ladder with a drill and he drilled straight thru the middle of the brain and kept on going and moving the ladder, that's what I imagined, but the syrinx was real, i would give drill up signal with hand and when drilling started I'd put hand down and said 'drilling'.  Then a year ago one got in my corraded and spent a week banging for a week, didn't go to hospital.  I have cayenne pills and they'd stop stroke, I didn't use them
620923 tn?1452915648
that was my intent.....  : )

great chiari minds think alike : D
1041839 tn?1278681846
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!

Oh, and that walmart or any big store thing we talked about. Getting confused and tunnel vision, and i think there were more associated with that.
1041839 tn?1278681846
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!

Oh, and that walmart or any big store thing we talked about. Getting confused and tunnel vision, and i think there were more associated with that.
1240947 tn?1268575220
My favorite is if you touch the left side of my face-especially if you lightly run a finger over my cheek-it'll paralyze the entire left side, even down the side of my neck. I'll cringe, and the ringing in my left ear goes CRAZY(!) Also, and I have no idea if it's part of the Chiari or not, but if I grip something (like the other day when I was chipping ice), I can NOT open my fingers back up. I physically have to get someone else to open them for me. Weird? Or "common"?
620923 tn?1452915648
It is the florescent lighting....they do mention black and white checkerboard floors, but those lights in the stores r really bad.
620923 tn?1452915648
Hyperventilating while talking.....I always got this on and off over the yrs.....I find if in a long convo it still happens....and then I get a HA...happily not like b4 surgery, but still there.
1179332 tn?1297478990
bekkah_boo...weird with the finger on cheek paralyzing thing!! I've never heard of that one! I have had the stiff grip thing though but not quite to that extent...I would just get a very slow recovery from my fingers and would have to flex my hand for a while to feel normal.

Selma...hyperventilating while talking...I just realized I do that too!! Another one that I wouldn't have connected...I just always thought that I was getting out of breath for whatever reason and I would keep having to stop and gasp for air...kinda embarrassing...but it would just hit here and there for no good reason.

And so it continues...
620923 tn?1452915648
I told u with what the drs acknowledge and "our " list we will have a manifesto ...lol....
1041839 tn?1278681846
Oh, i have the shortness of breath too! Sometimes my breathing sounds like I've been running but i'm just sitting there talking!
1179332 tn?1297478990
I know...so true!! At least I don't feel so bad going to the DR with 3 full pages of symptoms...cuz I know you guys are all doing it too!!
1240947 tn?1268575220
Hyperventilating. YES! DH always teases me when I'm trying to catch my breath. We only have about six stairs between each level, but sometimes you would think there's three times that many by how hard it is to breath! :D
620923 tn?1452915648
I am so glad to know I am not alone on that 1......I kept getting weird looks from the drs....
Avatar universal
What weird leg thing are you talking about? I am hopefully getting to the bottom of all of my issues and we are thinking that it may be Chiari, I went to the doctor this week. I have had some leg problems as well. It is so crazy reading all of these posts and being like "Oh my gosh, I do that too!"

Do any of you have a weird eye twitch? i just started this. Also, I have noticed that my periods keep getting later and later each month...they are never the same date and I have never had problems with this before.
620923 tn?1452915648
Hi...yes the eye twitch is very annoying...I was accused of winking at people...lol....I also get the twitch in other areas too, but it distorts the vision when it is happening.....

The more we share the more we find we have so much in common : )
1069888 tn?1421936741
Ok... I can't do this now, but I have 3 pages of things too!!  LOL!  And, yes, one doc looked at it, laughed and dismissed it!  WHAT?!

As I read the posts above though, I'm going "yes, yes, yes..."

Thank you for doing this Selma!  I was going to suggest something along this line, but I knew I couldn't handle it right now.  If you want to collect for a while, I will help assimilate the info once I get recouped from surgery.  I could also collect the same info from my other online buds who aren't necessarily in this group if you would like.

Am I sounding more optimistic again?!  :)  I will try to make my list easier for this forum so as not to be so long!

Thank you again... and, as always, BLESSINGS!

620923 tn?1452915648
I am so glad to "hear" this optimistic tone again....lol.....and go right ahead and gather bcuz we will continue to add to this as long as we have diff things someone is experiencing that is not on the "official lists "

1041839 tn?1278681846
Tonya, yes i have the eye twitching too. Very annoying and lately the twitching is in my left arm close to my elbow on the inside, its driving me crazy. The leg thing, or at least mine and i think carolyn's is similar, my right leg just kinda does what it wants to lol When i'm walking it might drag, or it turns funny, or it just doesn't want to move. Most of the time it looks like i'm limping. Shannon

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