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Junior Member
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Join Date: Mar 2011
Location: CALIFORNIA
Posts: 15
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Junior Member
Join Date: Mar 2011
Location: CALIFORNIA
Posts: 15
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Hi, I have neuralgias of the cranial nerves, not just one, but 10 on my right side. I have been dealing with this since I was 21, I just turned 48. It is a long, hard journey. But all life is.
In 25 years of treatment, you list the drug or treatment I've taken it. I've also had brain surgery. (I have not had radio ablation therapy.) So far, what has helped is the Botox and muscle relaxants, cognitive therapy for pain control and a yoga practice.
Do not let the physicians cow this young person and make her feel like this is all her in her head or that she is malingering. I heard these things so many times...and I was a Marine! We do not malinger. This is a miserable and vicious condition that will take all your energy to help her.
I don't even know how to complile all that I want to say about this. but please. Be her advocate! Be tough, and fight for treatment. The powerful drugs like Gabapentin are hard on the rest of the body systems she is young and needs to have her body stay healthy for a long time. A lot of them add weight and cause lethargy and that is only one more burden for a young lady to bear.
At my lowest, I attempted suicide twice because the pain was so bad and because the medical establisment found it easier to accuse me of searching for narcotics rather than to work to find a better way.
Narcotics really don't help nerve pain, btw. Don't get her started on them, They don't help with the pain and are addictive.
I have two sisters with this also. One has taken the route of narcotics/heavy pharmacuticals, her life is pretty miserable and now she is addicted as well. And extremely overweight because of medications.
The other just got diagnosed and is going thru what ever her docs recommend, although she asked for and recently got Botox because of my experience with it and it has helped.
Good luck to you. Good luck to your daughter. You will need it.
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