Discussions of issues related to living with cavernous angiomas


Postby KatzAD » Mon Oct 09, 2017 7:31 am

Hello Everyone,
I'm curious to see how many others have tremors? I have them all over my body, legs , arms, body, they are exhausting and painful. They started about 6 months ago or so. My symptoms started about 3 years go with head pain going beyond the migraine stage. I call it Head Pain because those of us with CM know we need a new descriptive word. mine felt more like stabbing electric shocks, extremely painful.. then more symptoms appeared, vision changes, I couldn't see things the same way, then sometimes I couldn't see at all, that was really scary. The muscle weakness was next, legs then back and arms. The tremors had gotten worse . Along with the loss of cognitive abilities, memory loss, difficulty with thought processes, and so much more going on. Anyway, How Many of you Have Tremors?
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Re: Tremors

Postby Michelle2000 » Tue Oct 10, 2017 3:10 am


My husband has tremor in his hands (and I think his legs, but I don't know if he'd agree), but I don't think it is what you are describing. I think his is more of an essential tremor, though I don't remember if that is what the neurologist called it. She did say that they could treat it when it became bothersome for him. Yours sounds bothersome. What does your neurologist say?

Best wishes,

16 year old son with brainstem CM resected in March 2010, CM at C2-C3,
CCM2 mutation; DH, MIL, & BIL with multiples in brain and spine
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Re: Tremors

Postby Elizabeth » Fri Oct 13, 2017 12:54 am


I'm not sure what you are describing is a tremor exactly. Have you had an MRI recently? Maybe you have had new bleeding and these are possibly new symptoms? Maybe seizures or spasticity? Sounds like you should go back to the doctors to me. I have spasticity on my left side after my stroke from surgery...its more of a cramping. It comes and goes, is very painful, and is mostly in my leg sometimes my arm...but it could occur anywhere that there is "brain damage". There are some meds that can help, but I haven't tried them. If its seizures, you might need medicine. Check with your doctors and come back. I'm curious what's going on as well. I hope you feel better soon.
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery.
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