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?