Tremors

Discussions of issues related to living with cavernous angiomas

Tremors

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

KatzAD,

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,

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

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

Hi,

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. http://www.thankfulforeveryday.blogspot.com
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Re: Tremors

Postby habibii_sala » Wed Dec 20, 2017 9:06 am

I understand completely. I think it is very important you get an MRI.

I was diagnosed with CM back in August/2017 in my left frontal lobe. What made my primary refer me to get an MRI was because random limbs would go numb for a few minutes, and those were known to be seizures. When the results came back we discovered I had an angioma.

Around late November the tremors began after I had an incident where I fell over, everything was black, and I started twitching.. but I was still conscious though unable to speak. I know have been told that was a seizure but at the time, I didn't because I felt too aware. Tremors started in my hands and then later during the month I noticed my right leg was numb and couldn't move my toes. I regained control of my toes half a day later but my leg was numb/weak/heavy/ached for about 4 days. I ignored it because I had was just playing soccer and had been riding my motorcycle in the cold and hoped it was due to that and ignored it. Later my left limbs started to go numb for days on ends and I figured it's definitely not related because it's on the same side as my angioma. So I ignored even more. (I'm dumb, please don't ignore things lol)

I got fed up and told my doctors a week later as the numbness/weakness/heaviness/aches and total discomfort did not totally go away nor the tremors. They ordered an MRI. They called back the next day and ordered me to be hospitalized and prepped/monitored before an emergency surgery... as my angioma was "changing"-- whatever that meant. My surgeon was out of town so I had to wait 3 days, and although I was nervous, I was also pumped It's finally going to be taken out. Now, they understood why my right side was acting up but didn't know why my left was, and thought the angioma was not the cause BUT they didn't rule it out. I just made my 2 weeks post surgery recovery q1mark! :D

I know I talk a lot-- bare with me! Basically....... to answer your question..... The tremors have softened but are still present. The "seizures" have stopped but idk if it's due to the anti-siezure meds that I am now on or the surgery. I feel wobbly when I walk but overall recovering well. But the tremors are worrying me. They said it will take my body time to adjust and that they will monitor as I've just got out of surgery. I noticed when I am unable to eat or drink the tremors are harder to ignore and I'm sure sleep plays a role with it as well.

Basically, I think you should tell your neuro and tell them you want an MRI (if they don't recommend 1st it that is). I don't know what to make of it and nobody has given me a straight forward answer if I'm honest. They also blame the meds, but it's been happening since before the meds.. You know what I mean? I'm glad to know I'm not the only one experiencing it too, as unfortunate as it is. I know I didn't really answer your question and gave more info than asked... It's 4am and unable to sleep, I truly apologize.
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Re: Tremors

Postby Vic » Tue Feb 13, 2018 7:16 pm

My mom was diagnosed with a cavernous angioma in 2014 located at the base of her brain and it had bled. They determined that it was too risky to remove. Months later, she was also diagnosed with Parkinson's and Polymyalgia. She is having another MRI on Friday to see what's going on with the angioma. From what I'm reading, many of the symptoms associated with the cavernous angioma are also symptoms of Parkinson's. Has anyone here had a similar diagnosis? Thank you for your assistance.
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Re: Tremors

Postby Elizabeth » Sat Feb 17, 2018 6:55 am

Welcome Vic,

I'm sorry your mom is having a hard time. Yes, sometimes getting the right diagnosis is challenging...I'm not sure what the diagnostic process is for Parkinson's, but ive heard of many others getting an inaccurate MS diagnosis before the doctors figure out its cavernous angiomas causing the problems. With an angioma in the cerebellum (is that where its at?) I could imagine tremors might be present if the angiomas bled. You might want to have her consult with one or more of the experts listed in the forum...to see what they think. I don't know either way, but its not unusual to get a wrong diagnosis and that's not helpful. Best wishes!
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. http://www.thankfulforeveryday.blogspot.com
Elizabeth
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