List of Symptoms

My daughter and I both have CM1and we both get nausea. Usually a headache precursor for me. My sisters daughter also has CM1 and her doctor put her on meds for “stomachs migraines”. I guess it helped but I don’t know what its called.
Symptoms can vary greatly from person to person. It took years for us to get our diagnosis. Keep a log of activity, mood, sleep patterns, ect if your not already doing so, it really helps with seeing the triggers.
Has she been checked for POTS (postural or to static tachycardia syndrome)? It is very common in Chiari patients.

Thought I'd attempt answering with my memory and concentration shot! I used to make those long lists 17 years ago when I first got sick, but now I don't like trying to get people to see that I AM sick. I just do the best I can through life, and realize I'll soon be gone from this world and symptom free in heaven.

memory shot

concentration shot

light headed

passing out

ears feel plugged and ringing

hearing loss- moderate

vision loss- severe

exhaustion

muscle weakness

extreme continuous headache

pain in whole body

severe anxiety

insomnia

Raynaud's syndrome

tachycardia

low blood pressure

numbness in hands, feet, and face

parathesia

constipation

hoarse voice

light and sound sensitivity

depression from all I've missed out on in life

recurrent yeast infections

sore neck

inability to bear children naturally (require c sections)

dropping things

brain fog

urinary frequency

tremor

shakiness

banging into things when I walk

hyperflexibilty/ joint dislocation

fatigue, fatigue, fatigue- can't even finish typing my list. I'm only half way through

Maggie you are one of the first I have talked to with Raynauds… do you have Chilblains (spelling?) as well have raynauds too! My & my daughters symptoms are right in line with yours. Have you been checked for EDS or cranioservical instability?

Razzle- my daughters eyes do the came thing. Do you know the exact cause if this? Her optic nerves show some elevation but no paplioedema (swelling). The eye Dr says its no big concern right now.

Shooting pains in head

Headache

Loss of balance

Pins and needles in face at times

Shooting in ears

Neck pain/ache

Shoulder blade pain/ they knot up

Eyes shake rapidly all of a sudden

Foggy head

Cant quite think of the word sometimes....always ends up being so simple too

Bad memory

Low back ache (Degenerative Disc Disease) Had a fusion...still aches. cold/rainy days are the worst

Shooting right thigh/ right thigh is mostly numb

Numbing hands, fingers and toes/ comes in and out

Yup that's about it.

Hi Pebbles! Sorry that I've not even heard of Chilblains. Definitely going to look it up though. As it was explained to me, my Raynaud's is part of my dysautonomia. Does your daughter have dysautonomia? Remember that POTS is just one of the hundreds of forms of dysautonomia. My symptoms are typical for it (except some of the neuro symptoms that are purely Chiari induced). Might be worth checking into. There's treatment available for most forms. You're right; I do have EDS symptoms, but no, I don't officially have the disease itself. I have to point out also that in addition to the chiari and dysautonomia, I also have Lyme disease. There's that rare possibility that your daughter could have both Lyme and Chiari at the same time. Off to look up Chilblains now...

I have wondered about POTS before. But the worst of her symptoms seem to be with activity that involves bending and stretching. I had her seem by a neurosurgeon in Utah last year and he didn't seem too concerned. I decide to have her arm by my neurosurgeon for her next visit. Her symptoms are so irregular is a bit difficult to manage. Mine are much more consistent. Hopefully she will outgrow the blackouts. She was 9mm last year and had grown almost 2", the headaches don't seem quite as bad now. Maybe her skull will grow enough to house her brain. Here to hoping!

Please don't be afraid of dysautonomia! There's very effective medicine for it. Your daughter can't keep blacking out. I'd have a tilt table test done if I were you. Could be that she needs flurinef or midodrine. If she does have dysautonomia, she'd feel a WHOLE lot better on medicine.

I was put on Inderal, Fioricet and Mudrin and it does help some. She hasn’t blacked out in about 6 months. We had her pe teacher allow her to sit out whenever she feels she needs to and that has seemed to stop that vagal response. I was thinking of having a sleep study done for her as well as her pulse rate is pretty erratic when she sleeps. She says she doesn’t feel it though, not even during the day. She has been to a led cardiologist but her just manually checked her pulse and sent us home. I tell you, this is one long road…

I have some of the same symptoms:

headaches (stabbing, pressure)

numbness (arm left arm hand and feet, in right thigh)

tingling upper left extremities and face

neck and shoulder pain

chest pain (like something squeezing my heart)

pain in the middle of my back

dizziness

slurred speech

blurred vision

trouble seeing at night especially driving

fatigue

depression

insomnia

in constant PAIN.

I'm tired of feeling like this I miss my old self!

Me three!!

TexasMom1977 said:

Yay! So I'm not crazy?? LoL! I swear, I feel like I am sometimes. Thankfully, I am surrounded by a pretty good group of friends & family who, so far, are pretty supportive.

Mandy said:

TexasMom, I get hiccups with soda too! And breaded products if I eat them too quickly. That's funny :)

Hello Everyone! This is my first post, and as it goes I am so nervous and full of unidentifiable emotions. Tracy Z, that list you posted.....I cannot believe how many of those symptoms I have! I would say more than 3/4 of it is me in a nutshell. I don't really know what all they symptoms are by heart so if you want to know what goes on with me just read that list. I know that I don't vomit in my sleep so that is one good thing.....I hate anything close to throwing up....lol!

Lware414

I have the symptoms as Maggie and also diagnosed with Raynaud's..

Just can't find a good NS since the Surgeon who did my decompression released me from his practice..

It's been well over a year since someone did a full workup and my symptoms just keep getting worse..

pebbles said:

Maggie you are one of the first I have talked to with Raynauds.. do you have Chilblains (spelling?) as well have raynauds too! My & my daughters symptoms are right in line with yours. Have you been checked for EDS or cranioservical instability?