does this sound like chiari??

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Hey ppl!! I've had alot of scary symtoms the past 4 months and no cause has yet been found. I've done all possible blood tests, lumbar puncture, CT scan, EKG, endoscopy through nose/troat, checked my ears and even my teeth.

It all started with a sudden crazy nausea and dizzyness that made me lay down and eventually went away after an hour or so. This happend three days in a row (weird).  Then one day I went out running and suddenly got this painful pressure at the back of my skull and pain in my chest which made me really dizzy and nauseated, so I stopped and walked home. The head pressure lasted the whole evening, but was pretty dull when I went to bed. I didnt notice it much the next morning but it hit me again when I was laughing the same day. And i've had it ever since. The pain has been pretty intense at times which have resulted in many hospital visits, but still no known cause. Nothing really gives me any relief. The pain can vary from being a painful pressure to a dull ache, and radiate to and around my ears/temple, eyes and jaw. Its more on the left side back of head than the right, but can hit me on the right side too. I've had and have bouts of other symtoms aswell:

- shooting pains in head

- chills/burning sensation up scalp and body

- muscle twitching all over body

- eyelid and lip twitch

-shooting ear pain

-dull ache in ears

- ear fullness

- whoosing sound in ear

-ringing/ buzzing in ear

- pain behind ears (like a bruised feeling) 

-face pain

-jaw pain

-sore teeth 

- hard to chew sometimes

- tightness in throat/ have to swallow many times to get food down (happens sometimes)

- some words are harder to pronounce

-pain in eyes

-floaters,spots, black shadows, wavy watery thingys in vision 

- unequal/dilated pupils

- heavy head feeling

- loss of muscle tone all over body (maybe because i've been bedridden for all these m

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12 Replies

  • Posted

    (posted a little to early so i'll continue down here) 

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    • Posted

      I also have

      -nausea everyday, that gets worse when bending down or doing anything really

      - GERD

      - post nasal drip, (wake up with a stuffy nose and sinus pressure every morning but gets better through the day)

      - back and neck pain sometimes

      - bad posture

      - arm/hand pain sometimes

      - hand/finger tremors

      - pressure/throbbing in head when bending over

      - blood pressure drop upon standing

      -shortness of breath 

      - clumsy (always stumble and walk into things)

      - lump in throat feeling

      - rapid heart rate sometimes

      - brain fog/ floaty unreal feeling 

      - hoarseness/weak voice sometimes

      - light sensitivity sometimes

      -heavy legs

      - cold hands and feet

      -frequent bathroom visits

      - dry skin and lips

      - brittle hair

      - feel bruised all over body

      - hip pain when sitting down 

      -pain in spine sometimes

      - loss of fine motor skills in hands

      -lack of gag reflex

      And thats about it... i also have this weird birthmark looking rash at back of skull down neck... dunno if its related in someway.. i,ll see if I can post a picture

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    • Posted

      Hi Em,

      As I said what you have that ..I have it all, but I am so worse because I could not even walk..I was house bound for over 18 months - the soonest I have got decompressed all those pressure and symptom gone except my back pain ..as I left it too long...so now..my specialists said ..for some reason some of the nerve were damaged S BRAIN being squashed....there you go..I have to e careful I lift..walk..posture etc..I do yoga each day..drink 2 ltrs of warm water and try so oooo   haaarrrd to lose weight...as the heavy I am the pressure my nerve and muscles will have (that was all my specialists said) you have to listen to your body..In my opinion chiari malformation is not a disease its a defect (something damaged or wrong in your anatomy and physical) its can only be erased it through operation in my case.  Just be persistent to your health care professional ask them to have it surgery as soon as possible

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  • Posted

    Hi Emma,

    Yes..all that symptom you mentioned plus..much..much more...!!! have you seen any neurologist for MRI/Scan-Cine test yet?..please ..please..get your decompress sort it ..I used to have all of that symptom but much more debilitated me..I am freed of drug and pain now..but geee I wished I done decompress straight away

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    • Posted

      Yeah im gonna meet a neurologist soon, hopefully i'll get MRI done!! But still.. scared s**tless.. im so afraid its gonna get worse than this.. did it get better with decompress surgery? Do you have any symptoms left?? Im only 18 feels like my life is over

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    • Posted

      Alma,

      At least you found out as early as that...thanks goodness for that..do not worry..once you have decompression (with the right surgeon) you will feel fantastic again.might not be 100% as don't forget part of your brain being squashed - then surely some of the nerve damage..but I was suddenly fainted and house bound for 18 months after surgery all that symptom gone straight away ..now I don't take any pain killer and also only have back pain now and then because apparently patient with chiari have unusual high flow on CFS..hence they feel like that sometimes..but make sure you get the right neurosurgeon...I promise you ..THERE IS LIFE IN THE END OF THE TUNNEL

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    • Posted

      glad ur doing better!! crazy what a tiny malformation can cause ya....but I guess thats what happens when its located in the brain!! many of my symptoms pop up whenever they feel like it... but the headaches...the nausea...,heavy head, pain in body,numbness,post nasal drip and ear aches...is constant! scared to see what my MRIs will show..have heard about a few other related conditions to chiari like syringomyelia, basilar invagination, something called ehler danlos.. scared I might have any of these..did you have any of them in combination with chiari? If so, how did it show itself?

       I`ll prob be back in a few weeks for an update regarding my MRI`s.. desperate for an answer to whats causing my symptoms..hoping its chiari..so I wont have to keep looking for an explanation. Thanks for all the help!! Xx

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    • Posted

      My daughter is 20 and just got diagnosed with this. She is seeing a surgeon in April and I hope they will do surgery. 
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    • Posted

      Honestly Alma, for what you had described, it is definitely chiari - make sure sure you read the website about it- so when you go back to them be persistent and firm to have the decompression
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    • Posted

      Yeah I will.. just want my life back, so sick of living like this sad I take anti depressants which is supposed to help ease the pain.. but it doesn't.. hopefully i'll be able to get surgery done!! Thanks for all the help, means alot <3

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  • Posted

    You should ask for an MRI/MRA both. This will show that you have Chiari Malformation. My daughter dealt with symptoms for 7 months before I took her to the ER. The ER wont do MRIs usually but if u tell them you believe you have this condition and that you request a MRI and MRA they may do that. This is what showed  neurology that she had this. Hope it helps. Dont give up a d good luck.
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    • Posted

      knowing that someone else my age are going through the same thing makes me feel so much better. I wish her all the best!!

      Im going to meet a neurologist soon and get MRI/MRA done..hopefully that'll give me some answers. But still...scared. Its like I cant even remember how things used to be before all this..going to bed without pain..running without getting a headache..going to school without getting dizzy... I just want my life back. Surgery seems to be the only thing that helps, hopefully I'll be able to get it done, and your daughter aswell!!!

      Thanks for the help, means alot <3

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