Trigeminal Neuralgia

Follow
Share

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.

This discussion has been closed for comment. Start a New Discussion.
Find Care & Housing
14

Comments

Show:
My mom has had TN since she was in her 50s (over 30 years), with varying periods of remission. She was advised by a neighbor to have the surgery that snips the trigeminal nerve (he also had TN and said it was the best thing he'd ever done), but she would never consider that option. Now there are so many different options, all with varying degrees of results - even good results not being permanent in many cases. I just don't think enough is really understood about the condition, but it is obviously one of the most horrible afflictions ever (hence dubbed "the suicide disease").
A couple of years ago, mom had the worst case ever of her pain - intense and unrelenting to the point that she could not talk, eat, or drink and had to be on IV fluids, and some serious pain meds including a pain patch. Ultimately she was given a nerve block shot in her face.. That calmed it down gradually, then she seemed to have sufficient releif from it for a significant period, though it was also the beginning of serious decline into dementia. (I feel that she was out of her mind with pain, and never came back to it.)
Recently the pain has returned, but the dementia has put a different spin on it - surprisingly in a beneficial way. At least with brief attacks that pass. However, this morning she is in intense pain that won't seem to pass and I fear another major upheaval is iminent. Prayers requested and gratefully accepted...
(0)
Report

My wife is 26 and suffers from Trigeminal Neuralgia. None of her 4 surgeries have been succesful and she still suffers daily. She has found some comfort with a Ketamine compound her surgeon prescribed her. I know that it is late, but I hope that this helps.
(0)
Report

No, it was not shingles, the doctor looked at it and said it was a reaction from the novcation from the shot. I just felt like it had to be looked at, it was a nice try, but the pain came back with a vengence. Her pain medications were increased and the pain is much better now, but she is sleeping a lot now, the medication makes her sleep a lot and can't stay awake very long. She begged me yesterday to have the medications withdrawn becauss she was embarrased about falling asleep during the activities at the nursing home and discussed it with the doctor, but evidently she was waking up in the night screaming in pain and they had to do something to stop it and she was losing weight from not being able to eat. I told her it is either have #10 pain or having the medications, so she agreed to stay on them. I do not know if they are going to try any more shots, seems like the shots make it worse. Next step would be gamma knife surgery, but it will have to wait until spring when the weather gets better as we are into snow and below zero cold now in North Dakota and she would have to travel out of town. I wish we had a good neurologist here in Jamestown, seems like all the specialists are out of town.
(0)
Report

Shingles are awful. My mom had that. I think you maybe on to something. A doctor appointment is likely in order.
keep us posed.
Carol
(0)
Report

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.
(0)
Report

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
(0)
Report

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.
(0)
Report

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.
(0)
Report

My sister's mother-in-law was afflicted with that terrible disease last year. She has since recovered by having gamma knife surgery
(0)
Report

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.
(0)
Report

This discussion has been closed for comment. Start a New Discussion.
Related
Questions