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.  

[laratterman]

OMG!  ALL the time... and in various places on my face.  I especially hate it when they are right by my eye.  And sometimes it even feels like its my eye itself!  So annoying!

Blessings, girl!

[Resa0508]

Hi. I was just recently given the diagnosis, though I started with "complex migraines" in 2003. Probably was the start of my CM, recently I am experiencing eye twitching constantly! Doesn't hurt. But annoying. I also get dizzy spells, when they hit I can only go left, like a circle. My family has had to manually get me to a seat. Shortly after the dizzy spells I get very nauseous and the headache hits w/ vengeance. I've tried taking my migraine meds and don't get much help w/them. Usually takes taking a narcotic and phenergan. That combo usually helps the headaches. I've been told I am a candidate for decompression surgery, but don't see neuro surgeon til 20th of this month...scares me!! Does anyone actually recommend the surgery?

[selmaS]

  Hi and welcome to the Chiari forum.

I am wondering , do u have a Chiari dx?

[Viva001]

Yes, me too.  It's apparently very common!  the twitching eyes can cause oscillopsia--the sensation that things are moving or vibrating in the periphery.  A bright oriental rug Or even lots of contrast in wood can make it seem alive.  There is a test for that, but you'll know if you have it.

I also have the *very* painful pelvic floor spasms; a friend calls them CHOP--charley horse of the privates.  Acupuncture helped that though, but I still have it a couple times/yr.
If anyone really wants to know the medical term, I can look In my records.

[Greedygretchen]

Yes, My upper lip twitches constantly. But recently, within the past 6 months, top and bottom lips twitch, almost like I'm puckering up to give a kiss. BUT I'm not!! I didn't pay much attention to it in the beginning, because I wasn't aware of it. Or should I say that I didn't notice it. However, now I am aware of it all of the time, as the twitching has increased significantly. It tends to be I little embarrassing when I'm out in public, especially when I find someone staring. And then I'm even MORE aware!! Ugh!!!
I feel I have to mention that a few of my other symptoms are increasing as well. Neck pain is increasing once again, balance is off, the ringing in the my right ear has gotten worse, my memory is suffering (and this scares me, especially when Im driving and all of a sudden don't remember where I am or where I'm going) numbness in right arm and lower leg, and the pressure in my head..... OMG!! Some days I feel like drilling a hole in the top would relieve it. NO!! I will not do this but..... Just saying'!!!  Thank you  : )

[kricklekrin]

Can you please tell me about your experience with Dr. Dan Heffez?

[kricklekrin]

I'm curious as to why Dr. Heffez said your not a candidate for surgery and may need treatment in the future.

When I began having scary symptoms last Sep. I had a MRI.  My GP didn't even tell me I had Chiari.  I was called and told my MRI was "essentially" normal.  I became suspicious and asked for the report to read myself.  I was so frustrated when I read what was on the report.  If I would not have read this report myself and looked up the medical language, I would still think I'm losing my mind.  For years, doctors did not know what was wrong.  Antidepressants was always the answer.  I was not depressed.  

I immediately scheduled an appointment with Dr. Heffez.  

I have a cousin with Chiari and since I've been diagnosed, two more cousins have been diagnosed as well.

I have an appointment with Dr. Heffez again next month.  He did not push surgery for me at the time of the first appointment, but because I e-mailed him with some symptoms he said I may be a candidate for surgery.  His MRI showed crowding on the R and my vertebral artery denting into my medulla.  My Chiari is mild and only 3mm below my foramen magnum, but there is crowding within my brain.    

I too was frustrated with not having a Cine MRI to see if there was fluid being blocked.
Especially because during that time I was having several seizure like episodes.  

He didn't push surgery, but he did say my symptoms may be from cervical myelopathy and I wore a neck brace for 5-6 weeks.  He wanted to rule this out as the cause of many of my symptoms.  When I continued to have symptoms and contacted him, he then said I may be a candidate for surgery.  I think at this time he will do a Cine MRI to see if surgery would help me.  And I really don't know if I'm ready for surgery.  

What I'm trying to say is, your Chiari may be mild and if you continue to have symptoms and decide to call him back to let him know of these symptoms, he may do a Cine MRI at that time.  Only then will you know if your Chiari mild or not is causing your symptoms.  

Good Luck,  Kristel    

[gmaldonado]

I didn't read over all the posts but YES!!!! I twtich and OMG IT ANNOYING!!! Especially in my head!People look at me weird when i put my hand over my head and i say "ugh!!! my head is twitching!" my eyes, my lips my jaw area...arms legs fingers..among other areas..down there you know where. The haze and the static that too. ..the spots and the halos that too.  Its crazy!

[selmaS]

Hi...I get what I call a spasm in my neck...feels like the muscles r cramping..especially after I yawn...very odd, but stretching helps that too...wonder if it is the same and we just call it a doff name?

"selma"

[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?

[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 : )

[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]

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"

[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.

[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.

[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.  

[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.

[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.  

[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"

[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.....

[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,

[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!

[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

[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.