Re: Top Five Symptoms Survey to the Chiari Group

[Guest guest]

DIAGNOSED CHIARI 1

Surgery this January 10th with Dr. Frim in Chicago

top five symptoms:

Headache

Pressure in head and neck

ringing in ears

fatigue

tingling in arms and legs ( pins and needles kinda feeling)

other symptoms

weak muscles

blurred vision

balance

coordination

loss of sleep

cant sleep laying down

palpitations

racey feelings

drop attacks

let me know the outcome of your survey. This should be interesting.

TERRI

[Guest guest]

My top five symptoms before surgery were:

dreadful, horrible, excruciating headaches

dysautonomia - postural tachycardia, orthostatic intolerance, bladder, bowel,

vision involvement

muscle and joint aches

profound fatigue

short term memory loss

There is a whole page of symptoms on my website - nearly every part of the

body, I think, was affected!

Lauri

[Guest guest]

FROGGGY2U@... wrote, possibly quoting others -

>loss of sleep

do you mean you have a sort of insomnia feeling?

i've noticed that within the past two - three weeks, i have barely been

able to sleep at all. somtimes my neck is just too sore and i can't get

comfortable.

but mostly, i just don't feel like sleeping. it's hard to explain,

something i've never experienced. it's like i know i should be sleeping,

and sometimes i almost feel like i'll start hallucinating, i'm so tired,

but i can't shut down.

i get a racey feeling, sometimes night sweats from the pain and pressure in

my head and neck. Very uncomfortable so even if I do doze off, I wake all

night long. My husband says I moan in my sleep all night and he gets me ice

packs for my neck all thru the night. I havent slept in a bed in four

years.....Ive slept in a recliner. When I lay flat or even propped up in a

bed or couch the pressure builds in my head. I am going for my surgery with

Dr. Frim on January 10th. I hope all this goes away.

TERRI

[Guest guest]

I have many more than 5. I made this list just yesterday.....

I have had many of these symptoms for 19 years, some are new within the

last 9 months.

Thanks for asking this question, it will be interesting to see who has

what.

Heaviness of limbs

Numbess of legs and arms

Legs get goozebumps/chills

Buzzing sensations in body

Feels like arms and legs are waking up from being asleep, hurts to move

them

Pain in legs, arms and buttocks

Pain in neck, muscle spasms

Fasciculations all over body (getting worse, more pronounced)

3 episodes of waking from sleep due to gagging

3 episodes of waking up with knee pain

2 episode of waking up with severe R knee pain

Hearing loss in left ear getting worse

Palpitations? Then I get SOB, pain and tightness

Body twitching ( I call them " bodyquakes " )

Feel like I am toxic, flulike, general ill feeling

Head shakes

Headaches

Easy fatiguing of muscles

Nausea

Numb L toe

Neck pain and spasm

Diarrhea

Daily low grade fevers

" stpnwlf00 " wrote:

original article:/group/chiari/?start=28635

> I think it would be interesting if everyone listed their top five

most frequent symptoms. Let's include those of us diagnosed and those

suspecting they may have Chiari. I'd be interested in seeing what

results we come up with!

> Thanks, " Steppenwolf "

>

[Guest guest]

Hi all,

I was diagnosed with Chiari type I this past summer. My top five symptoms are:

1. Fatigue

2. Brain fog - combo of disorientation, short term memory problems, difficulty speaking

3. Headaches

4. Nausea

5. Dizziness

I know this has been mentioned here before, but just as a reminder, there was a survey done in 1997 of members here and the results can be found at the following link: http://www.pressenter.com/~wacma/survey.htm It includes a variety of things in addition to the most common symptoms, including factors that aggravate symptoms, symptom alleviation, medications used, and more interesting info.

Take care,

Jess

[Guest guest]

FROGGGY2U@... wrote, possibly quoting others -

>loss of sleep

do you mean you have a sort of insomnia feeling?

i've noticed that within the past two - three weeks, i have barely been

able to sleep at all. somtimes my neck is just too sore and i can't get

comfortable.

but mostly, i just don't feel like sleeping. it's hard to explain,

something i've never experienced. it's like i know i should be sleeping,

and sometimes i almost feel like i'll start hallucinating, i'm so tired,

but i can't shut down.

i have resorted to taking melatonin in the evenings, but sometimes when

that wears off after a few hours, i am awake again.

anyone else going through this?

eg

[Guest guest]

> " stpnwlf00 " wrote:

>original article:/group/chiari/?start=28635

> I think it would be interesting if everyone listed their top five

>most frequent symptoms. Let's include those of us diagnosed and those

>suspecting they may have Chiari. I'd be interested in seeing what

>results we come up with!

> Thanks, " Steppenwolf "

>

Top Five:

€ pressure in head and neck

-neck pressure is just the last couple of weeks

-previously noted on list, beer usually helps pressure

€ headaches in all their myriad forms

€ tingling/prickly feeling/numbness in random areas of body

€ swaying when standing/unsteady when walking

€ insomnia

-also new, showed up with the neck pain

Chiari Type I, 8mm herniation, with syrinx.

other problems -

€ occasional stuttering

€ hypersensitivity to light

€ tinnitis

€ vertigo

€ inability to think & function with loud or confusing sounds

€ intolerance to flashing lights (strobe lights, police car lights,

etc)

€ loss of feeling in various upper body areas - i.e., a pin prick

doesn't always cause a reaction in certain areas of my head and arms

eg

[Guest guest]

Neck pain

Bodyquakes; tremors

fasiculations (feet)

Chronic Fatigue

short of breath

My top 5/ yours??