Aa
Does this sound like chiari????
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 the last months dunno)
-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
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 the last months dunno)
-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
Some of the symptoms sound eerily familiar, especially the part of all tests coming back normal. I would demand an mri of the c-spine and head. A ct scan is notorious for missing chiari.
1 Comments
Yeah.... gonna meet a neurologist soon!! Hopefully i'll get some answers!! Thanks for the help!! Xx
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
Many of your symptoms could indicate Chiari and a few other conditions...that may be related or non related.
You will want testing for your thyroid, a condition known as Hashimoto's thyroiditis is linked to those with Chiari and the brittle hair made me think thyroid...it can also cause several of your other symptoms....have your vitamins checked, B, D and B12's.....magnesium and potassium levels....
Funny you mention the rash as it is a newer thread and concern for a few members, I saw you did post to that thread....I am not aware of the rash being related but with a few members dealing with it, it may be....we all do deal with this in our own way since we are all affected differently.
Testing you should have in addition to thyroid Free T3 and FreeT4 and TPO antibodies.....is a brain , cervical and thoracic and lumbar MRI as well as a CINE MRI to check CSF flow.And testing to rule out Ehlers-Danlos and ALL related conditions. Syringomyelia, IIH, ICP,retroflexed odontoid,basilar invagnation,disk issues,sleep apnea.....and a few more I am sure I will add later.
Oh, GERD and reflux are related to Chiari.....I wanted to let you know....it may be you also have a hiatal hernia ...and possibly over produce histimines....have your Dr check into that too.
Many of your symptoms could indicate Chiari and a few other conditions...that may be related or non related.
You will want testing for your thyroid, a condition known as Hashimoto's thyroiditis is linked to those with Chiari and the brittle hair made me think thyroid...it can also cause several of your other symptoms....have your vitamins checked, B, D and B12's.....magnesium and potassium levels....
Funny you mention the rash as it is a newer thread and concern for a few members, I saw you did post to that thread....I am not aware of the rash being related but with a few members dealing with it, it may be....we all do deal with this in our own way since we are all affected differently.
Testing you should have in addition to thyroid Free T3 and FreeT4 and TPO antibodies.....is a brain , cervical and thoracic and lumbar MRI as well as a CINE MRI to check CSF flow.And testing to rule out Ehlers-Danlos and ALL related conditions. Syringomyelia, IIH, ICP,retroflexed odontoid,basilar invagnation,disk issues,sleep apnea.....and a few more I am sure I will add later.
Oh, GERD and reflux are related to Chiari.....I wanted to let you know....it may be you also have a hiatal hernia ...and possibly over produce histimines....have your Dr check into that too.
3 Comments
I've already tested for thyriod, and all possible vitamins.. all was normal except some low vitamin d, maybe thats the cause of my brittle hair (or a crappy shampoo) I eat alot of multivitamins and omega 3, vitamin d, c and so on.. feel like its helping a bit!! I've also started taking antidepressants.. couldn't deal with this on my own.. Im about to meet a neuro soon hopefully i'll get an MRI of head, neck and back. I've read a bit about all the chiari related conditions.. scared I might have syringomyelia as I feel no heat or cold in my hands and also have no reflexes in arms, and stiffness and pain.. especially in my back!! I also have pretty hypermobile hands.. weird. My GERD issues isnt so bad as it comes and goes, but still..pretty damn annoying!! Thanks for the help Selma!! loove your name btw!! I'll be back when i've done all my MRI's.. excited too see what it shows!! Xx
forgot to mention that I also have so many visible veins on my body.. i've always had that but feels like they're more visible now than before..and cant look to the side with my left eye...scary.. anyways Thanks!!! Xx
The visbile veins may be a EDS issue....do check it out.
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