Mouth symptoms

[jvilletina2]

Several times a week I will suddenly notice that the far back part of my tongue on the left side is all bitten and swollen. It's so "chewed up" that it's hard for me to talk for hours afterwards. I must be biting it but I've never felt it.

I also have recurring line on the inside of my cheeks where my teeth must chew into my cheeks during the night.

Occasionally it feels like the inside of my throat just seizes up as I try to drink a glass of water quickly. Quite painful.

Any one else out there like me?

It is comforting to be able to ask these absurd questions and know that I will be taken seriously - thanks everyone!
Tina

[gmaldonado]

2 days late lol but anyway...I'd want to smell too! I've never had problems w/skype but whatever works! my DH told me last night that he's got internet now yay! We'll have to try it out make sure it works =-)

[selmaS]

Well I could see her cooking...just wished I could smell it too : )

my DD did have skype but had some problems with it so we now have the windows live...it works very good ...I have never tried the skype per her suggestions....

Glad it works for u and hope ur DH gets logged in pretty soon....that should make things a little easier : )

[gmaldonado]

You're so silly...smellvision would be a neat thing though lol I use SKYPE with my cousin in ft. hood tx and whenever her husband is in IRAQ (us army) we'll SKYPE w/him too. My husband doesnt have internet in hawaii yet but as soon as he gets it we're skype-ing too! Thanks, I am truely blessed indeed.

[selmaS]

We do use windows live to keep in touch as well as phone calls...but the windows live helps sooooooooo much more, a bit of tech I really love <3

We did a cooking session with it...she wanted to make my manicotti and she had all the ingredients together and had the comp where I could watch her and I instructed her as she did it...only thing I wished it had smellivision too...lol....

awwwwww ....u r truely blessed.

"selma"

[gmaldonado]

True very true. I know my friend was on Vicadin (mispelled) forever after the birth. That's great that she's coming home! My soon to be 4yr old is such a good girl ...I'm just praying that she stays that way...now my baby boy...I can already tell he's a momma's boy lol  He follows me with his eyes EVERYWHERE LOL

[selmaS]

I do believe that we have soooo much pain for so long we r almost immune to what would make an avg person  go running for meds....

Aww thanks, she is a good kid...and I just spoke to her on the phone she will deff be coming home whoooooooohoooooo : )

[gmaldonado]

Very true. Perhaps thats why when I had both my C sections I didnt really take pain killers..and everyone was in shock ..they even forced me to take meds! I saw the pics of your daughter. She is beautiful. I'll make sure to post some pics!

[selmaS]

Well, I really think chiari helps us be stronger for what we have to deal with and chiarians r some of the strongest people around.....

Yeah, that is how it started for me than nothing at all would come out when I went to sing.....I had no idea I had chiari when this all was going on...lol....

awwww well I look forward to the pics...I have some of myt DD in my profile

[gmaldonado]

I just feel my throat tightening on the sides when i sing and cry. I used to sing really nice....I guess something happened cause my voice went byebye lol It is a weird feeling indeed. Aw thanks =-) I've got to be a tough cookie . Like any other human I have mymoments of weekness but I've got to hang in there for my chunky monkeys lol. My son is the chunkiest one lol My daughter just got my thighs lol I have to post some pictures I've got a ton in my camera but I'm lazy to upload.

[selmaS]

Yeah I get that too...did u ever get a weird sensation when u go to sing or cry?

It is very odd...b4 surgery when I tried to sing, nothing came out.... and it felt really weird too....I can not imagine having little ones and  being left alone and having chiari.....u r one tough cookie : )

"selma"

[gmaldonado]

lol tell me about it! it's Hashi's....NOT NORMAL hello!  Yea I can keep it to a minimum..I'm gona have to tell my friend I cant help her move again. I am used to it but doesn't matter how used to it i am I still cry everytime he leaves and I find it hard at times to go day by day but Christ is my strength =-) I completely forgot about their posts too! I guess we hold it cause it's hard to swallow? I was wondering with the throat issues and what not...does anyone have throat pain? I feel like a pulling pain, its a dull pulling pain from my jaw to the end of my throat. Its weird.

[selmaS]

I am not sure how u can have Hashi's with normal function??....that is very odd.

Well, I am sure u can keep ur lifting to a minimum,,,,lol,,,the kiddies...or in ur case the chunkey monkies  : )too cute....lol....

I am sorry u r alone like that, I guess u r used to that as well.....

Thanks Shannon, I did miss the posts u and Carolyn mentioning the holding the water/liquid.

I find this a very strange issue and no one else has mentioned it b4...I did it much more b4 surgery and didn't realize until I lifted my glass to take another sip that I had something in my mouth,.....

"selma"

[shanmomof3]

selma, read back through, me and carolyn do the half swallowing thing too. So thats at least 4 of us that have that problem ;-)

[gmaldonado]

I have Hashimotos thyroiditis but they say I have normal function...to me if I have Hashi's then i the function aint normal lol. I'm going to keep pushing for that. OMG my eyes keep twitching! does anyone have that problem?? if it aint my left eye its my right back and forth back and forth its so annoying! Well I figured that the lifting is a NO NO cause when I do alot of it I feel horrible especially my headaches. With my kids its hard not to lift. My 4mth old is a chunky monkey and carrying him w/the car seat is tough and its a daily thing. my 4yr old weighs 36lbs and sometimes I have to carry her in and out of the car when she's asleep. My husband is in hawaii for work for God knows how long, he's the one that helps me out when he's here. But for the most part its me by myself since he's gone most of the time. I'm sure theres more than 2 with the liquid holding lol maybe they dont realize they're doing it !

[selmaS]

Have u been tested for an autoimmune thyroid issue?

My heart palps have calmed down since getting on meds.

Well at least there r 2 of us that hold our liquids...lol....

Lifting is a NONO for chiarians...b4 or after surgery...so try to take it easy.

"selma"

[gmaldonado]

lol You're welcome! I noticed at times I unintentionally hold my breath and I think thats when I get the palps most of the time. I wonder too if our food/fluid intake will have any effect to our symptoms. that night that i had the "attack" in which i couldnt breathe and myheart was racing over 160 i had drank way too much caffeine..and overworked my body by helping my friend move into storage. i notice that when i have too much coffee or  sodium (especially after eating chinese) i notice my heart rate goes up. of course there are those times when it just happens w/o reason...hope i make sense. I feel like a mouse in a maze lol ay ay ay or as if we have this world wide puzzle and each of us have dif pieces

[selmaS]

Thanks for letting me know u also do that when u drink...I thought I was the only one....lol....

and u r right, in using the forum we r finding we r not alone and do have more symptoms that the drs list on their chiari symptoms lists....

our manifesto (list) is growing by the day.....

"selma"

[gmaldonado]

haha I just think that its so funny how all of us say "what? wait...YOU TOO?!!!" omg!! LOL its all making sense. the more questions we ask the more we find out how the issues are common among chiarians. It's so true how perhaps we should just say we have a neurological condition because I too tend to over explain things...and if i say "chiari malformation" i get the blank faces too and then like chiarigirl ..have to go into a story. The reply is always "oh wow..that's scary, are you ok? And i'm like "duh and obviously not!" lol Some day, somewhere some genious doctor will come to the conclusion that all these little things..that some dont consider symptoms are really related to chiari. Oh and I too hold part of my drink in my mouth..i didnt realize i was doing that until i read your comments and paid attention. =-D

[chiarigirl11]

oh my god! i thought i was the only one....like when my friends ssay hey you wanna go play some basketball/football....or any sport..obviously i cant so then i have to go into a huge story because i say oh sorry i cant and then they ask why and im just like i have a brain thing...and there like ohhh what and i go chiarimalformation then i have to go into a story.,..such a pain ! its interesting when people actually ask me...are you gunna die from that? and im just like oh thats a  nice question to ask...

[*Stormy*]

LOL Ray...maybe I should just try the short and sweet version...sometimes I have this need to over explain everything... you know like if you had MS..you could just say that and everyone would understand. But Chiari...they look at you with a blank expression on their face!

Tina..I do the typing thing too..I am always substituting the wrong words than what I am thinking..I have to reread everything or it makes no sense!! It's funny usually when I reread it I can catch it though..makes me worried b/c to go back to school, I have to pass another typing test.
Like Shannon said..if you have an absent gag reflex..that is very common to happen. It causes the muscle to go slack near the back of your throat so it is not constricted like it should be and things just slide on down....I don't know how many times I have choked..it's scary. I have to tell myself to chew, chew, chew..I actually noticed that I felt like I had to chew more b4 I knew about the gag reflex issues...so obviously somewhere in my subconscious it detected it..
Another thing I find weird..is when I want to swallow sometimes I have to wait until I feel the urge (like trying to swallow a pill) but then other times I swallow prematurely b4 I am ready..and that's when I feel the danger of choking.

Selma...I was just drinking my coffee as I type this...and I do hold some in too..I sort of half swallow!!

Neava...they thought I had MS too and that was their only focus..which is why the Chiari was missed the first time around..Lately I have been biting the front of my lip too..that came after my mouth feeling "weird"..

Shannon...take heart, I totally know what you are going through now. Even my family did it..I think they all wanted to believe I would be cured. Finally, I just told them straight out how it was and that things were not going to snap back in place that quickly. I still have to remind then now..when I'm not getting enough help and everyone is leaving everything up to mom. As for outside people..I figure they can believe what they want..it doesn't change how I feel. At 3 weeks, I can still remember how awful I felt..so make sure you are getting your rest :)

Carolyn

[rod44]

Hi Carolyn, I usually tell people I have a neurological condition ........... and if that dont work I tell them to mind their own business lol.  


Ray

[shanmomof3]

oh, and selma i do that too i just didnt realize i did lol after i read through this again i went and took a drink and i have to swallow twice to get it all down - wierd! And i'm havin the same problem with people thinking my problem is "fixed" since i had surgery. Monday will be 3 weeks post op and everyone that has come to see me this week is like, "you dont even look like you had surgery and your walking so much better!" which i am walking A LOT better but i want to scream its only been 3 weeks people! Sorry for the tangent i just get frustrated. Since people dont understand chiari they dont or dont want to understand how serious it is!

[shanmomof3]

Tina, do you have a gag reflex? If you dont that is the reason you swallow things you shouldn't or didnt mean to. It has happened to me several times, usually with a piece of bread or meat that was too big and i didnt mean for it to go down but it did and then i end up choking :( its to the point now that i cut my food up really small like i'm fixing it for my youngest child lol but kinda sad

[neava]

hi

i also do that, i never thought about it being part of chiari, i sometimes end up with blood plisters on the inside of cheeks,

i gag and have trouble eating and drinking sometimes, i thought it was me being a pig, lol

my doc thought it was a MS symtom (thats when they thought i had that) but OMG its fits in with everyone else,