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Anyone taking care of an aging parent with trigeminal neuralgia? Trying to find something that will help my mom with this terrible, horrible pain that is keep her from eating, speaking and landing her in the nursing home.
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Carol Bradley Bursack
Nov 9, 2009
Have all of her medications been looked at? My dad had this as a side effect of a medication. It was horrible. I'm just throwing this out as something that always needs to be considered.
I remember his pain and our helplessness. If there are others on the site who have seen this, I hope they can give you some comfort.Carol
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Thanks for your response. We pretty much withdrew all medications while she was in the hospital, and she still had the pain. She takes three different medications for the neuralgia, all of them together cause drowsiness and confusion and dizziness, but they do help to control some of the worst pain. I am hoping that this shot they are giving her tommorow will work.
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Nov 10, 2009
I hope so, too. The pain from this can be terrible.We are thinking of you.Carol
mta
Nov 11, 2009
I have TN and the pain is awful. I feel for your mom. The medication that has helped me the most is tegretol. If medication does not work, there are surgical options.
Mom had her shot yesterday. We do not know yet if it will take away the pain. The doctor did say that gamma knife surgery will be the next option, but it is major surgery and that might be risky with her congestive heart failure, but every time she has a shot there is some risk when they gave her anesthetic. We will have to see, it might take a few weeks to know if the shot has really worked. Trouble with the shots it that they only last a few months and then you have to go back. Having gamma knife surgery is a permanent relief from TN pain. It is really mom's decision, she is the one that has to live with this horrible pain.
arose4yu
My sister's mother-in-law was afflicted with that terrible disease last year. She has since recovered by having gamma knife surgery
It's not that invasive of surgery, I actually documented her case on my website last year. She was awake for the whole procedure. The "invasive" part was screwing the head gear to the sides of her head.
Mom has a bruise all over the right side of her face now, still having the same pain, even more intense, cannot hardly eat and having trouble talking. We may have to investigate the gamma knife surgery next, but they can't do that for a few more months after this injection heals up and the bruise goes away. It is really hard for her to accept the help in the nursing home, trying to get me to take her back again and only wanting me to help her 24/7 again, had not even asked for an ice pack until I came late in the afternoon. She wants out of the nursing home so bad she is trying to do everything herself and not ringing for help when she needs it.
Nov 12, 2009
that's just terrible and I hope she can get that surgery right away....it's literally a "life saver"....I can't imagine enduring that pain especially at that age. I wish you all the best. Perhaps you can check out the trigeminal neuralgia association and look at other treatment options besides gamma ray. Here is their link http://www.fpa-support.org/aboutfp/index.html
Nov 17, 2009
Mom now has a rash on the same side of her face where she has the pain, something really weird is going on and now she has the pain all the time. I will have to call and have the nursing home set up a doctor appointment. Sometimes shingles causes TN and she says her mouth feels like it has a lot of sores in it. She has had shingles before and maybe it has come back.
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