twitching anyone?

[kricklekrin]

Can anyone tell me if they experience head or face twitching with their Chiari?  I'm having a lot of twitching near my temples, very annoying.  

[*Stormy*]

Definitely...I get them all over my face..lips, nose, eyes, scalp..you name it. I also get twitches all over my body too. Yes, it is very annoying but I am just happy that for the most part it's painless (unlike the muscle spasms).

Carolyn

[selmaS]

Hi....yup...I especially hate the ones near my eye....not only is iti annoying, but it can disturb vision as well.

"selma"

[LisaM46]

Hi, yes, me too.  Most bothersome the last week & a half, my right upper eyelid has been twitching.  I get the feeling like something is on my upper left lip and right nostril (not twitching) but, still, it feels like something's there.  I've had random twitches little areas on my thighs & hip area too.  (But, as Carolyn says, it doesn't hurt!)

Selma, when you say it disturbs your vision, does it seem hazy to you at times?

Lisa

[rod44]

yup, I have the twitching, I also have a very mild "yes yes essential head tremor" and this causes vision problems. I am not aware of the tremor and it is not viable but was detected during testing for CM.

Do you have twitching in other areas?

Ray

[*Stormy*]

What do you mean by hazy vision? When I first starting having vision disturbances, I would notice I would be looking through this haze sort of like heat waves or something. It would happen especially after a run (didn't know I had CM..so I was probably really upping the pressure in my head). Anyway, after that, I started to have the floaters, sparklies, double vision etc...

Do you have any other vision issues?

Carolyn

[LisaM46]

Kind of like, if I were wearing glasses, they're dirty, or there's something on the lens.  Not constant, just random here & there.

Lisa

[selmaS]

Lisa..when I say blurry vision u can say it is similar to ur description of dirty glasses.....
Carolyn,...I have seen the waves too....
and I even had the window of rain....u know when u r in the car and it  is raining...the effect u get in ur peripheral vision?...well I got that and I was not in a car and it was not raining....I felt like I had some weird blinders on.....

"selma"

[*Stormy*]

Hmmm..one thing I noticed very early on that I was seeing static everywhere...light static in bright light...and then static (like when the TV is on a bad channel) in dim light which makes it very hard for me to see in the dark.

It does sound like you are starting to experience some visual disturbances..you might want to add that to your list!

Carolyn

[selmaS]

Has neone ever experienced when indoors and looking out to a sunny day...gotten the flashing lights when u turn to look back in side?


Yeah Carolyn in a semi dark room...the static is there.....I hate going from a well lit room to a darken room or vice versa.....and balance is all off in a darker room....

[lilmiss1999]

I have the twitching in my lip and around my eyes. also in my legs and hip ares. Also in my forearm and back of arms. no pain like you said, just annoying.

I get the flashes like when a car passes by and the sunlight is reflected off the windshield. It happens during the day and at night when im in bed with my eyes closed. also sometimes hard to sleep because of the light show going on behind my eyelids. dont know how else to describe. when i close my eyes I get areas of light that seem to roll over my eye then a dark area and then the light again. will do this over and over. I actually watch it. probably sounds really odd....and it IS! I have to remind myself my eyes are closed and it cant be seen by anybody else.

[FeyShadow]

YES to the twitching.  Everything twitches.  It's annoying as Heck one minute, then just funny.  My fingers were twitching so badly the other day, my "kitten" (she's a bit developmentally behind... someone apparently threw her out of a moving car when she was about 4 1/2 weeks old, so has brain damage) decided she had a new toy and kept attacking them.  The worst, though, is the eye twitches... nystagmus, I think it's called?  Don't know, exactly, if that's what it is or not, but it's like my vision absolutely vibrates, only way to describe it.  VERY annoying.  Does anyone get a twitch-like feeling in/around the spine???  Thought I'd ask.

Scottie

[blondeballerina07]

ALL THE TIME!!! My leg muscles are the worst, I have had strangers say to me do you know your thigh is twictching. uhhh?!?! I do thank you for pointing it out! But my eyes twitch, the right side of my mouth, my forearm, my calves, my thighs and hamstrings also twitch. THANK GOD not all at once. I also have tremors so maybe that is part of it i don't know but it sure is obnoxious!

[neava]

i get twicting over body, even in my groan, i sometimes get like feeling like bugs are walking over my head, it goes once i touch it, then back again,
i get the static look at night also, i was stearing in the dark lastnight,thinking thats weirld,


selma
i also get flashing of lights, makes you look twice,

[kricklekrin]

So, sounds like the twitches are a symptom of Chiari.  Yes, not painful, but annoying.  

How about muscle spasms.  Probably TMI, but I get them in my buttocks, and then pain down my legs.  

You guys are so funny.  Some days are not laughable, but I try to laugh at some of my symptoms, or I think I'll go crazy.

One of the hardest things to deal with is how little people understand about this condition.  I feel like a big liar these days when people ask how I am.  "Oh, I'm good how are you?"  What I want to say is my head feels like it's about to explode and the room is spinning, how are you?   I just don't talk about the Chiari, because they just don't understand.   Everyone expects me to be super woman, just like I was before these symptoms decided to take over my life.  Anyways, long winded.....

[selmaS]

A good friend should be able to tell by looking into ur eyes how u feel, and know when u r lying....if they don't, they r not paying attention.

I was fortunate to work with someone for 8 yrs that only had to look at me to see I was in pain...she said my eyes got glassy...so I never had to say a thing.,...it is nice when that happens.


neava-I am so glad to hear I am not the only one with the flashing lights : )

"selma"

[AJ29349]

I have eys, nose and facial muscle twitching, but thank goodness it is only if I squint.  It is as if there is a fine line there, because it doesn't have to be a full squint.  I look like a bunny rabbit with my nose and it is uncontrollable.  You know what a neurosurgeon told me at a top knotch university?  He told me I was making myself do that.  Sure, I love doing that to myself! LOL.  I have noticed now, since I am logging pain and symptoms, that my legs will out of the blue jump, maybe up to 10 times a day.  They have a mind of their own.  Sometimes my arms will, but more often it is my legs.  

[4inline]

I know what you mean about "I'm just fine" because people care, but they really don't want to hear it.  If you go beyond that you can tell that people's attention begins to wander.  What I want to say is, "Well, as long as I take my meds it helps control the twitches and spasms and tremors and even the ringing in my ears, although I now have to take meds for my stomach because the meds for the twitches, etc. are killing my gut and I have diarrhea and nausea so bad I can't stand it.  When I ride in the boat and the wind whips my face, afterward it feels like spiders are crawling all over my face.  It wears off eventually.  Sometimes I feel like they're crawling all over my head.  And I can't swallow very well.  Have to really concentrate on it.  And now my tongue feels out of control.  It just kind of flops around at times.  And my head hurts, and my neck hurts....."  well, I'll stop there.  But that's what I want to yell sometimes, especially at doctors.  I asked my NL about my tongue and she said she didn't know, never been asked that.  How's that for professional behavior.  There was no, "I'll try to find out."  Anyway, ranting.  I'll stop.

[kricklekrin]

I'm sure people really do care, but they just don't understand.  Unless you suddenly drop or fall into something they don't see the many symptoms of Chiari.  

And then, they may think you've been drinking!

When I stumble in front of my family they begin to giggle, especially my children.  This used to upset me, but now I laugh with them.  I find that laughing at my symptoms helps.  Even though many of them are not laughable, but painful.  The painful symptoms are the ones they don't see.  

I'm also learning that talking about all my symptoms with doctors just gives them the opportunity to make you feel crazy.  Especially if the doctor is not a Chiari specialist.  
The feeling crazy may just be the insecurities about the many strange symptoms of Chiari.  

My most recent symptoms:  It feels like someone has their hand inside my head pushing my brain towards my face.  My front teeth hurt!  I'm waiting for them to start shooting out of my mouth one at a time...

At this time I'm contemplating surgery.  Very scared.....  Anyone here see Dr. Dan Hefezz?

[lostflower]

i get the pain in my teeth radiating from my headaches also.  I thought I was going crazy.  Helps to hear im not the only one.

Recently diagnosed, and suddenly the last few years of my life make so much sense.  

[emza1910]

hi,
i actually get alot of twitchin.. all over.. eyeslids, checks, temples, arms, fingers, bum cheeks - everywhere.. if im relaxin, tired or even wen i get excited.. i actually thought it was down to my seizures but maybe it isnt.. interestin though. im findin out all kinds bein on this forum.

selma - your right about the friends knowin how you truly look - jus before the kids broke from school - i was havin a very bad week. i walked into the playground, past a few parents, and stood by the fence - within minutes - one parent i normally talk to came over - asked if i was ok - at the point i couldnt respond i jus stared at her then bosh - fell to the floor shakin. luckily she shouted her partner n he caught me before i hit the floor. how embrassin ay - i could hav waited til the bell had gone - i must hav scared half the people in their - thing is though cus im semi conscous i can see people starin n its that i dont like as it makes me feel like a weirdo.. i wish i could control my signs n symptoms - god if only ay. i always say im ok, i try n hide alot of it as i hate feelin like its always about me as its not.. i hate the attention. and i hate people fussin! makes me feel im useless..
the school hav told me though in september they guna look about doin an awareness course for parents.. me other friend that was at the school said as soon as she saw me that mornin she commented to one of the other parents n said i didnt look right.. i told her if she sees me like that again - watch the girls for me.. as thats wat i worry about! as it can jus come on, and im findin with all this pain its bein more n more.

kricklekrin - i know what ya mean about havin to laugh about things now - i do too - ya jus gotta ent ya. and ive jus gotta say OMG - my teeth hurt too although i put them down to cus me head hurts.

[4inline]

Actually, we drove up to Milwaukee as a family vacation this summer just so that I could see Dr. Heffez.  He said that I'm not a candidate for surgery at this time, for which I was glad.  I told him that I was only there to see if Chiari could be what's causing all of my problems and wasn't ready for surgery anyway, so we were on the same page.  He said I may need further care with him in the future, but not now.  That told me that he's not surgery happy just for the heck of it.  So that's good.  The staff is very pleasant and everything is professional enough.  My impression of Dr. Heffez was that he's probably a very good surgeon.  He was willing to answer questions and didn't seem to be in a hurry to get me out the door.  He's more business and not extremely personable, or I didn't get that impression during my time with him.  He may be more so if you're facing surgery.  The only thing that bothered me was when I asked him about my CSF flow and he said something like he didn't even consider that or look at that or something to that effect.  I thought that was a major thing.  So that question went unanswered and I now wish I'd pushed it a little further.  In short, if you're thinking of going to him, I would recommend it if you can manage it.  Good luck.

[selmaS]

Hi...we do have a few members that went to Dr Heffez...shanmomof3 and n40066....and a couple of others....send them a note and I am sure they will share what they know about this dr.

Soccero - Molly...had a redo by Dr H...so any of these members can tell u about this dr.

"selma"

[dkdean]

Well shoot....Add that to my list of Chiari-related symptoms...didn't ever think that was related....mine is mainly with each eye and sometimes my lip...I always thought it was stress or I needed more potassium and would eat a banana!!!  Too bad a banana cannot cure herniated tonsils!! ;)  Mine will happen for a week or so and then go away for a bit.

[selmaS]

I always thought the twitching was that I was over tired...lol....oh well....I also thought it was low levels of diff vitamins and minerals too....


If only it could be that easy....eat a banana and u r cured : )

[jpurple]

I get the head tremors and also the eye twitching.  The head tremors are embarassing because i'm talking to people and keep stretching my neck to get it to stop somewhat.  I don't know what else to do.  My pcp said to do the stretching but it doesn't stop it, I wonder what would help?