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Old 01-28-2012, 08:26 AM   #1
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markeym3 HB User
thalamic pain

Hello all,i have suffered with nerve pain in my left foot and limb since having a stroke,,i have tried various medications,and seem to be eating morphine all the time,the burning ,tearing sensation i get is so bad some days,i see my doctor at the pain clinic every six months and never seem to get very far,,the option now is brain surgery,,which i'm very reluctant to have
but if any you guys suffer with nerve pain you know you will do anything to take the pain away..if anyone has any advice i would bw very gratefull
thankyou

 
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Old 03-18-2012, 12:37 PM   #2
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ellenwood41 HB User
Re: thalamic pain

Dear Thalamic Pain Sufferer; I did go to Mayo in Rochester and visted a Dr. Lee who talked about pain surgery.Wire put into my brain while I was awake and tried to find an area that it helped. Attached to a pain box under the skin. I would have to go back to Rochester MN once a month for adjustments. At that time I could not bring myself to do so. Now I am wondering if I should do so. They put me on a pain medicine regiment to work up to levels that help me up until a month ago. I take Lyrica 150 mg twice a day * a.m., Gabapentine 600 mg 3 times a day, 8 a.m.,2:00 p.m., and 8:00 p.m. ( for some reason Gabapentine works better than high doses of Lyrica) Cymbaltia( nerve Pain side of it) 60 mg twice a day. Bachlofen 5 mg 2 x aday for leg spasms. I have pain left side of body searing heat and pins in my eye,ear,left arm, left side and leg feels like a pickup sitting on it. For A while, I thought just change in barometric pressure low would bring it on with a vengence. Lately we have had great weather and still puts me under the table. I do take Hydrocodone when it gets beyond my body to contol pain. I do not take morphine or oxycodoine. I could not get information about anyone who had the brain surgery or the wire and how it worked for them. Did not want to suffer another stroke. Where did they recommend for you to go for surgery? Mine was Mayo at Rochester MN. I would like to talk to someone who has done the surgery or if it even helped. It seems to be getting worse and unbearable the pain.

Last edited by ellenwood41; 03-18-2012 at 12:41 PM. Reason: added thoughts

 
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Old 03-21-2012, 03:12 PM   #3
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markeym3 HB User
Re: thalamic pain

Hello i am in the uk and i'm waiting on an appointment to see the neuro surgeon who is going to explain what the brain surgery involves etc,i want to ask him what the sucess rate is before deciding to have this op,as with any op there is a high risk of another stroke etc,but i will keep u updated with any information that i recieve,take care
Nikki

 
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Old 01-26-2013, 11:16 AM   #4
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davewinps HB User
Re: thalamic pain

Quote:
Originally Posted by markeym3 View Post
Hello all,i have suffered with nerve pain in my left foot and limb since having a stroke,,i have tried various medications,and seem to be eating morphine all the time,the burning ,tearing sensation i get is so bad some days,i see my doctor at the pain clinic every six months and never seem to get very far,,the option now is brain surgery,,which i'm very reluctant to have
but if any you guys suffer with nerve pain you know you will do anything to take the pain away..if anyone has any advice i would bw very gratefull
thankyou
It's my understanding (and experience) that ordinary pain killers are frustratingly ineffective with our condition.

Better results will be had with with tricyclic or SRNI anti-depressants, such as (in my case) amitriptyline, prestiq (or, perhaps, the less expensive effexor, or the widely advertised Cymbalta), gabapentin (or its more expensive brand name Lyrica), and carbabazine. It's been my experience that vicodin enhances the effect of gabapentin.

You might try to find as many opinions as you can. A psychiatrist turned me on to carbabazine, having been told about it by a patient: it takes care of the 'walking on broken glass' sensation. I learned about prestiq which I take for depression, when I forgot a couple of doses and woke up in the middle of the night with my right side 'in flame'.

Best of luck!

 
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