You know you have chiari when.... you have to stop playing with two year old daughter after only five minutes and she says "cause you have a headache?" :( I mean does she even know what a headache is or is she just repeating what she's heard me say over and over??
you look under the counter in the cabinet for.....something. You sit down on the floor and wait for it to come back to you. After looking around in there you see it. Oh, yeah!! It's the pill box you were looking for to put your meds in because you take so many you can't remember whether you've taken them or not.
...when you say something completely wrong and your 5 year old says "I think may your brain is having a hard time working right now"
this one comes up a lot, but ....when explaining the 'condition' takes sooooooooooooooooooooooooo long, it's easier to say "It's commonly misdiagnosed as MS or fibromialgia (fibromyalgia)" and then people start to understand.
Wow.....I really wanted to post a statement too, I really knew exactly what to type and it was a good one. I forgot after reading the rest of the posts. Thanks ya'll. I laughed and cried at the same time.I can totally relate. :/
You know you have chiari when you massage your own neck, back, legs and arms.
....when you're symptoms match anxiety and you can't differentiate the two.but then you know its both.
.....when you're kids know more about it than medical professionals
...........uhhhh I forgot this last one.:/ I think it probably would have made us laugh. :D
This is a fun thread...makes me feel like I belong because I can totally relate.
You know you have Chiari when...
...you have that burning pain on your shoulders every night making you toss and turn to find the "right position and the right pillow for tonight" - thus you rarely have a good night's sleep...and that is your normal. Wait until you have that headache to come along with it - there goes your sleep...
You know you haveChiari when.... you know all the family Dr's and ER Dr's in your town plus a few others by name, and they know you too.
Ps......now that I have my diagnosis, I'm bringing my MRI reports and disk to all local hospitals and Drs offices to inform and educate :)
I don't know if this is chiari or senility....You pack up your kids to bring them to daycare before you head off to work and when you are almost to work realize that you forgot to drop off your kids...
@ achyten108...so true about the lists & lists! UGH!
@Cryxus...that poem makes me cry, too!
My "you know you have Chiari when" for this week is when you go to tell your kids not to get wet when they go outside and instead say "don't get whacked!" or you tell your husband that your kids need dance bathing suits, when you actually meant bathing suit cover ups or you tell your friend as you leave their house that you're leaving through the garage door, but in actuality, you are leaving through the deck door!!! Ah, the joys of word recall...or the lack there of!
I have been dealing will ALL of the symptoms listed in the posts and in the poem...I thought I was going crazy, NO ONE understands. To be honest at times I've felt like I've had no options or will to live if it weren't for my kids. I saw many doctors and gave up a few years ago but recently I was sent to a neurologist that did EMG's because the orthopedic doctor I was seeing initially thought that thought I may have carpal tunnel because of all of the numbness in the arms & hands. His testing showed no carpal tunnel so he ordered an MRI of the neck maybe a pinched nerve and sent me to a neurologist. I didn't tell the neurologist of all the years of trying to find the cause numbness extending down arms into the hands in addition to head pressure, pain in my neck, memory loss/saying weird stuff, ringing in my ears, imbalanced, light headed, head pounding to the extent I feel as if I'll pass out if I bend over laugh or cough and sometimes when I sit my chest feels tight just below my bust. I also have a lump in my throat all of the time, I can feel every time I swallow. I have panic attacks because I get so scared sometimes. After the test and seeing my MRI he said that I have low cerebellar tonsils and ordered and MRI and MRA I have done tomorrow. I feel like this all happened for a reason...finally I may get help. No official Chiari diagnosis yet, I see him for the results next week…I really feel like it is getting worse the pressure won’t stop!
lol I often wonder are we better off not knowing we have CM.
The next time I see my NS I am going to tell him he got my diagnoses wrong, the MRI was wrong, the Radiologist who read the scan was Wrong. I will tell him I am just Anxious & Depressed. Reverse psychology with the expectation that this approach will get him to see the obvious. If it walks like a duck, quacks like a duck, looks like a duck, it must be a duck :)
cant find the keys when they are in your hand, or your sunglasses when they are on your head,or your wearing them... when you put the milk in the cabinet take it out to put i up cause you know it dont go there and have to think... where does this go...
i wonder how long i will be this great full to read about people like me...
you know you have chiari when a sudden attack of head pain comes on while you're standing in the kitchen and because it's so bad you ask for a couch pillow to be brought to you to lay on the kitchen floor...and your family thinks its completely normal!!!
you know u have chiari
when all you have to do is look at your spouse in that special way and...he rolls his eyes and starts rubbing your sore neck.
when you look up and realize everyone is staring at you becuase your 20 and sitting in a shopping cart, while your friend pushes you around the store...maybe that ones just me but i hate the lights!
You know you have chiari when...
The ONLY thing that's not too loud for you is total quiet. (My kids are finding this quite bothersome lol).
Not only am I always at a loss for words now...I can't spell or type them anymore!!!
You get in the shower, busy thinking about your chiari. After about 5 minutes you notice your shampoo isn't working at all like normal. Spend a few more minutes looking at said shampoo and use a different one, same again. Its only then I realise a vital element is missing! I forgot to turn the shower on. I spent a good 10 minutes in a waterless shower this morning. I'm generally quite flaky but that's a first :)
Wow- these are so true! I finally found a group who understands the frustration, pain and forgetfullness. You know you have chiair when - you are always apoligizing to your spouce for loosing track of things, yelling for no reason, forgetting to turn off the gas stove...I got lost in the car the other day- I couldn't remember how to get home- I was a mile away...
My family has started a book called Gracisims- of all the crazy things that have happened since the car accident and then the discovery of the chiari...some of them are too funny...
When u started I thought u were going to say u did something else....cuz I did something similar...I went to shampoo my hair and no sudz...and I couldn't understand and a few times didn't notice, and wondered y my hair seemed as tho I never washed it.....I used cream rinse not shampoo...duh..I think this went on for a month b4 I figured it out too!!!
you know u have chiari when........ you are in mid sentence and stop talking because u know u are about to say the wrong word for something and just can't spit out the right word.... I do this several times a day. My friends and family still haven't gotten used to it. They get this shocked look on there face and say " what, is something wrong"? LOL
....when you go back to the doctor over and over again for these "headaches" and they tell you to cut back on your caffiene. And when that doesn't work and they have run out of ideas they tell you "It's all in your head!" So you go to a neurologist on your own because your doctor wouldn't refer you and damn it turns out: IT IS ALL IN YOUR HEAD!!!!
....when 18 years after surgery to remove part of your skull to relieve your symptoms they suddenly re-appear!
You know you have Chiari when...
You used to get ready for bed by putting on a pretty nite gown and some perfume hoping you get lucky...
Now you get ready for bed by putting on pain cream, a shoulder brace, neck brace and cpap mask, then hope you will get some sleep and not wake up with a headache...
You know it ... When people ask you if your for real!
I had a teacher-parents meeting yesterday and I wanted to ask a question and I could never get it out! After a few minute I still coudnt get it strait out so I stumbled out of the room and the teacher asked me if I was real!!! So my husband had to explain everything :-)
you know u have chiari when: u hold urself up in your own bedroom with a debilitating headache that wont go away for 2 DAYS!!!!!!!! and everything u take ..doesnt work. and ur husband and children dont even ask u what's wrong anymore cuz they know the answer will be " I HAVE A HEADACHE AND DONT KNOW WHERE I AM (most of the time)
- You know you have it when you accuse your husband of moving your cellphone and now you can't find it. He says you're always forgetting and misplacing stuff, and you're on the verge of tears because you can't absolutely call him a liar because you know there is the possibility you really don't remember and then when you're totally and completely frazzled and want to punch the wall you look down and the cell phone is in your hand.
- When you can't remember what a plate is and crazily yell at your husband "you know that thing you put food on and then you eat off of it" while he stands there wondering if you're taking yet another crazy a** prescription from another dismissive doctor or whether you're really a crazy witch he should divorce.
...when you want to give your baby neice a cracker and tell your 6 yr old son to stop jumping, but you put the cracker in your 6 yr olds mouth while looking at your neice and sternly say "stop jumping"...
...when you try to tell your husband "okay let's go to bed", and it comes out "zzhhvveshhaa" with a straight face...
...when you would rather give birth every day for a week straight, than have another chiari headache...
...when you turn up the TV so you can hear something besides the ringing in your ears
...when your neck and shoulders hurt so bad that your family is afraid to touch you in fear they will make it worse
...when you drive somewhere and cant remember doing it
...when you have a great time with family trying to laugh, almost passing out from the pain, and then wake up with what seems like a hang over from the HA the fun caused...(worried about the upcoming holidays with this one and the visiting family)
...when your teenage kids can successfuly run the household while you laying in your bed all day
...when the first thing everyone says to you is Hi, How are you feeling?
...when your DDs boyfriend begins researching CM in hope to find someone that can help
...when you have your own language, which mostly sounds like jibberish- and your family can translate it
...when you ground one of your kids for doing something wrong, only when your husband asks, you cant remember what you took away, for how long, what they did wrong in the first place, or even which kid it was
...when you tell everyone in the house where you are putting something because history proves that if you dont - you'll never find it again! You just remember that its in a safe place!
Thank you roktta06 for the Dr. rec. I havent been seen by any Dr yet, have found a few names,,,but couldnt remember where I left them.
Sorry for the delay momof3gr8kids...I think I'm liking the comments left by roktta06 on thses two. I will be following up with these names in Jan. when the new insurance starts. I'll try to remember to post my liking/disliking. Keep me posted on what you find.
When the cops arrest you in youre appartment parking lot because you went forward insted of going backward and they say that they have been watching you for the last 5 minutes first go to your car will walking wobly and then fumbled with your keys and then you almost hitting the lamp post.
I told them I wanst drunk! But they didnt belived me! Well they had to let my go! My test was clean and I had to explained to them that I always walk like that! They told me to take a taxi if I was this tired! Oh my! My HD wont be impress when I'm going to tell him that.
Everything is all right selma. One of the cop came back to talk to me. He sais that they are not going to do nothing about this incident. He as a sister that as MS and he sais that after he googled Chiari, it made him think about her and her stugles. So he just told me that next time I feel like tonight to take a taxi insted of the car to stay on the safe side.
I have the same problem reading shampoo bottles, and couldn't understand y the shampoo was not coming up to a lather, and y my hair sis not look clean afterward...both bottles were conditioner....so I was "washing" my hair with conditioner for a month...had no idea.. and it took until the end of the month for me to even notice.....great
You know u have chiari when you spell it so much on your iPhone it no longer comes up with a suggested spelling "chair" instead it just accepts it as correct.
You know u have chiari when u are the only 20yr old in your town that does not drink because of medication, has no idea which is the best club because let's face it even on a "good" day that ain't happening and defiantly would prefer a cup of tea and a hot bath then a night on the town!
U know you have chiari when the life u have is gone
U know u have chiari when u sitting in your car and you shaking and every body think u shaking your head from the music .... if u get tremors u know what I mean... when u don't even have your radio on lol
...you don't make plans because you don't know if that will be a good day or not.
...you cringe when people say, "keeyaree-whuh?"
...you drop your pen on the floor and you spend a full 5 minutes contemplating whether you should risk bending over to pick it up or should just go try to find another one..
...you have found creative ways for flicking your foot under your clothing to launch it up in the air to pick it up off the floor, instead of bending over...
...you need something on a high shelf but know if you look up you will fall over, so you go find a stockboy.
...you have to remind people to not tell you jokes because you don't want to laugh.
...you relish that nanosecond of pain-free time in the morning between when you know you are awake to when you open your eyes and have to move.
...you debate taking the elevator or the stairs. Which will jar you the LEAST?
...you have to explain to your boss that it isn't just a headache, that your brain is just too damn big for your skull so its looking to escape down your spinal cord.
...everything hurts all the time, nothing tastes good, everything smells bad, every little sound gets on your nerves and you can't take anything that makes the pain or this weird dizzy/nausea/crushing throat/winter coat feeling go away...
Oh man, I laughed at this one - when you cant find the keys when they are in your hand, or your sunglasses when they are on your head,or your wearing them...
I do that all the time hahaha! When you are in the middle of a conversation with someone, and start to say something but stop all of a sudden because the thought fell out of your head. So you say "uh sorry, I forgot. I have a broken brain."
This is just hysterical I am laughing so hard but trying not to! Lol
Ok so .... When you pick things up and drop them constantly
When you walk like a drunk
When a pill that would normally knock you out only JUST takes
the edge of your headache
When you are sitting on the front porch in boiling weather and
You need a blanket cos you're cold
When you forget and get up too fast and the whole room spins
And turns black
..and when your ambidextrous..and had to sit and try to remember which hand you write with.
...and when your doctor doesnt know what else to do about your headaches, so he tells you to quit brushing your hair so hard
LOL oh man that is hilarious...I sometimes can't remember what hand I write with either hahaha!
When someone on a medical show gets a drill through the skull to relieve pressure on the brain and everyone around you talks about how painful and gross that would be you cant help but smile and think "that sounds really nice..."
When your vision is so blurry that you think you forgot to put you glasses on but when you go looking for them...they are already on!!!
When you call you pcp because of a headache that is horrible and nothing is relieving it and they tell you to go to the ER then when you get to the ER they say why didn't you go to your pcp you know we can't treat chronic pain....eeeerrrrr!!!
You keep a list of medications on your iPhone because there is no way you can remember what you take or the dosage and because it changes so often if you make a printed list you'd use a reem of paper within a few months!!!
- You take allergy medication each morning just in case, because you're so scared of sneezing
- You visit the doctor after booking months ahead for your pain and suffering, he asks what's wrong, and you can't think of anything
- You're scared of the dark because you might get lost in your 1-bedroom apartment
Hello everyone, this is MamboMom's fiance. She approved these lol....You know you have chiari when she yells at me for misplacing the keys but find out they are in her pocket, and the next night are yelled at again because she thinks I lost the keys that are really just in her hand....lol I still love her :-)
I told him :-) And I'm gonna show him more of the forums this evening, so he might join too. Oh but he does want me to add that I drove us home just now (rare occurrence) and forgot to let him out of the car before I pulled into the carport AFTER backing out to get straight again....he had no way of getting out and just started laughing till I realized what happened...
You know you have Chiari.... When your 12yrld son lol @ you and says "Mom you know you just tripped over NOTHING and you are barefoot?!?!" Then my DH says "shhhhh she'll yell at you" as he to lol under his breath
You know you have chiari when the eldest dog who has hip problems walk faster than you can manage.
You know you have chiari when your gi doctor puts you on all the antiacids that don't work than have you checked to see if you qualify for the gerd surgery and when denied the doctors start putting you on the same antiacids that don't work again.
You know you have chiari when you ask more questions than anyone else in your class.
You know you have chiari when you put your head on your left hand for the millionth time and your hand slips for the first time.
You know you have chiari when the doctor says you passed the strength test but you have massive strength loss in one hand that was explained away by a different disorder so the other hand shouldn't have been equal in strenght.
You know you have chiari when you stop trusting your doctors because they still believe you have blank even though your tests prove differently.
You know you have chiari when you want to post your doctor in a bad way on a website for everyone to see. (sorry I don't like facebook.)
You know you have chiari when you watch mystery diagnosis looking so that you can find the cause of your symptoms.
You know you have chiari when you hope that the next fall won't break either leg because you don't have enough strenght to use crutches or manual wheelchairs.
You know you have chiari when you ask your friends to stand in front of you while walking down stairs and in back when walking up.
You know you have chiari when you had 10 hours sleep and you feel like you only took a half hour nap.
You know you have chiari when all you want to do is go home and sleep.
You know you have chiari when your roommates can't hear their tvs because you say it's loud.
When you explain to people that your brain is falling out...they laugh you laugh but secretly inside you are in agony.
You have a 10 month old baby and almost pass out from laughing at how cute he is all the time
You have a plan to explain to your 10 month old son when he is older that mommy's brain is falling out
When hired at a new job people think you are out of your damn mind for stumbling your words and forget what you are about to say or do every couple minutes!
Your neck and shoulder blades throb all day long and sometimes rubbing them or popping your neck the right way can help1
and Drew, I could never watch my DD on the Merry -Go -round....so sad...I would stand and wave and she would say did u see me, and I said yes, but I could not watch...not just the getting sick, but I would get wobbly like I was going to fall over...lol...same with swings, so sad : (
You know you have chiari when......you try to be a dutiful wife to your husband and run him a bath.....only for him to have to empty it and start again because it's too cold! Well....... I thought it was a nice temp......
:-) Opposite problem. Often I can not reach my back due to neck pain radiating into arms. So my dear wife will come in to scrub my back only to burn her hands. Way too often I can't feel the heat and end up with the water way too hot. She won't let me run her bath water!
You know you have chiari when: You just want to have a normal day, to laugh, play and not hurt. Thank all of you for your post. I had post fossa decompression surgery in Nov. for my Chiari, I wish I could say that it made a difference, but it hasn't it was NOT worth having to go through the surgery it was horrible!!!
You know you have Chiari...-
-when you sneeze and have extreme pain.
-when you are 16 and all your friends are driving and you can't get your license because you have black outs.
-when you cannot stay awake at work or school because you slept about 2 hours last night.
-when someone complains about a "headache" and you can't even say anything back.
-when your friends know to walk around you just in case your trip or fall.
-when you hands go instantly numb and you drop everything.
-when having a cold means having horrible pain every time you cough.
-when the MRI techs know you by name.
-when you have more hospital bracelets then jewelry.
-when you have more doctors then family members.
-when no one understands the pain you go through everyday...
U know u have chiari, when you start to form.a search party for your dog, and calling out her name @1 am. To find out 20 minutes later, she was in the house, never took out to begin with!!!!! Called my sister in tears to help me find her....
Your stinking neurologist tells you your issues are not neurological and you start crying and she says why are you crying and you say no reason thinking I have chiari....I cry because I have chiari and you don't listen to me so the answer is no reason ugh!
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