Thalamic pain

Discussions of issues related to living with cavernous angiomas

Thalamic pain

Postby PattiG » Wed Oct 13, 2010 10:35 pm

Anyone else coping w/thalamic pain? If so, what works to help ease your pain?? :idea:
I've tried Lyrica and Neurontin, but cannot tolerate :shock: the side effects and they didn't help w/pain.
Have tried a session of accupuncture and it eased the burning sensation in hand momentarily, but pain returned.
Then to add to the 'fun' of CM-land, also have constant feeling of muscle tightness that only worsens with gentle exercise.
Some days seem more tolerable than others and today's not one of them. :?

Thanks for any input,
Patti :)
Multiple CMs throughout my brain. I have had 4 bleeds requiring surgery between 1987 and 2010. Locations of craniotomies have been: L. parietal, R. parietal, L. temporal and R. thalamus.
A Central Pain Syndrome Survivor's Perspective http://strokeconnection.strokeassociati ... rspective/
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Re: Thalamic pain

Postby heidihi » Fri Oct 15, 2010 4:44 pm

Patti,

Sometimes I wonder if I have this pain also, I know my surg was very close to hypothalmus. I get "Nerve like , burning pain" also on my right side, also get hot sensations too! Sometimes it's really painful, I also have a burning, raw feeling in my ear on side that bleed was on, this comes and goes. I try not to take anything but if I really need something I will take one motrin 200mg and that's all, I am very hesitant about meds, as it is I am on Ambien and have been since 2mo. post op and I do know it will be hard to get off of it but have only been getting good sleep for the past 2 mo. I think the surgery really messed up my circadiem (spell ;-) rhythm... Anyway just my 2 pennies!

Hope this gets better with time for you!

Heidihi
Dx w/CM 5/10, had ataxia, odd sensations, weakness in legs, finally could not walk and had a simple/partial seizure-surgery next day @ UCSF when I could not walk any longer. It's been almost 1yr & I am thankful to be alive, still struggeling w/transient weakness in both legs, now headaches & other things (poss. simple seizures) but I know I am here for a reason... Glad I found the AA~!
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Re: Thalamic pain

Postby Libby » Fri Oct 15, 2010 5:41 pm

Heidi, the sleep thing isn't surprising because the hypothalamus controls sleeping. It is also in charge of you staying alseep.Unfortunately the brain cell that controlled that went down in the flood. I go to sleep fine. Then I wake up within a half an hour of 2 AM and I am very awake. I take klonipin at night and then I sleep through fine (with the exception of the "old lady" trips to the bathroom :) )
Heidi, your ccm was removed and you have no more, right? I'm sure that is right. Whew. Just worried about you taking motrin. That is definitely on the list of things people with a ccm can't take.
multiple ccms in brain including thalamus and in brainstem. 9 bleeds . Large venous angioma and multiple large veins in the brain. Various lymphangiomas and hemangiomas in head.
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Re: Thalamic pain

Postby heidihi » Fri Oct 15, 2010 6:28 pm

Hello LIbby,

Yes, had one CCM and it was removed May 2010. I am still awaiting to hear back from NS regarding the hematoma on MRI - he is the only one that can compare from previous MRI from 2 mo. PO. I prob shouldn't take motrin since we don't know what the hematoma is all about but hopefully it's just a shrinking bruise from surgery but doesn't seem right to me. Thanx for the concern! Have a great weekend!

Heidihi!
Dx w/CM 5/10, had ataxia, odd sensations, weakness in legs, finally could not walk and had a simple/partial seizure-surgery next day @ UCSF when I could not walk any longer. It's been almost 1yr & I am thankful to be alive, still struggeling w/transient weakness in both legs, now headaches & other things (poss. simple seizures) but I know I am here for a reason... Glad I found the AA~!
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