1. < Brain & Nervous System

Trigeminal Neuralgia*

Posted by lamerex4 @lamerex4, Jun 23, 2016

My 92 year old father was diagnosed with Trigeminal Neuralgia more than a decade ago. For a long time Amitriptyline kept the 'strikes' at bay. He became symptomatic again last October. In March they did a Gamma Knife radiation treatment. This halted his symptoms for about 6 weeks. Two weeks ago he started having daily 'strikes' again. His PCP switched him from Amitriptyline to Lyrica. Now that he is weaned completely off the Amitriptyline and on the full dose of Lyrica he is having 'strikes' several times a day. The local neurosurgeons won't consider surgery, but we are desperate. Any insights at all on any therapeutic modalities would be appreciated. Acupuncture was not effective.

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Tlgreg60 | @tlgreg60 | Aug 9, 2016
In reply to @tlgreg60 "Hi. I'm caught in a Doctor hamster wheel. I got three root canals and in and..." + (show)
@tlgreg60

Hi. I'm caught in a Doctor hamster wheel. I got three root canals and in and out implants. Now I just have implant no teeth daily throbbing. Dentist did brain MRI suspect MS I am 56. I seen neurologist yesterday. Now contrast MRI. I am allergic to most pain medications. I seriously don't know where to turn. Obviously this is a lot bigger than I'm saying because there have been multiple doctors involved and somehow each one of them have dropped the ball. I got three went on vacation and so did a nurse. Over 2 months and I'm still trying to figure out. First MRI was supposed to be with contrast and they screwed up. I feel very alone abandoned insecure scared in a new state in the south due too husbands career. Exhausted in Georgia.

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No I meet with neuro Thursday. The nurse kind of mentioned it iver phone today.

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Tlgreg60 | @tlgreg60 | Aug 9, 2016
In reply to @tlgreg60 "Hi. I'm caught in a Doctor hamster wheel. I got three root canals and in and..." + (show)
@tlgreg60

Hi. I'm caught in a Doctor hamster wheel. I got three root canals and in and out implants. Now I just have implant no teeth daily throbbing. Dentist did brain MRI suspect MS I am 56. I seen neurologist yesterday. Now contrast MRI. I am allergic to most pain medications. I seriously don't know where to turn. Obviously this is a lot bigger than I'm saying because there have been multiple doctors involved and somehow each one of them have dropped the ball. I got three went on vacation and so did a nurse. Over 2 months and I'm still trying to figure out. First MRI was supposed to be with contrast and they screwed up. I feel very alone abandoned insecure scared in a new state in the south due too husbands career. Exhausted in Georgia.

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@lamerx what do you know of sudden onset of throbbing in two teeth that never existed until j had a bridge put in. I seriously feel like a puzzle missing pieces. Doctors that not only drop the ball but needles on floor and still use on me. This has been crazy to say the least

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lamerex4 | @lamerex4 | Aug 9, 2016
In reply to @tlgreg60 "Hi. I'm caught in a Doctor hamster wheel. I got three root canals and in and..." + (show)
@tlgreg60

Hi. I'm caught in a Doctor hamster wheel. I got three root canals and in and out implants. Now I just have implant no teeth daily throbbing. Dentist did brain MRI suspect MS I am 56. I seen neurologist yesterday. Now contrast MRI. I am allergic to most pain medications. I seriously don't know where to turn. Obviously this is a lot bigger than I'm saying because there have been multiple doctors involved and somehow each one of them have dropped the ball. I got three went on vacation and so did a nurse. Over 2 months and I'm still trying to figure out. First MRI was supposed to be with contrast and they screwed up. I feel very alone abandoned insecure scared in a new state in the south due too husbands career. Exhausted in Georgia.

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I am not a dentist nor an oral surgeon nor a medical doctor, so I'm afraid I can't explain your symptoms. Your statement about doctors dropping needles and then using them on you has me deeply concerned. I hope you reported this situation. I learned a long time of go, if I know something is wrong, I don't sit there and take it; I refuse the procedure and ask to see another practitioner. Good luck.

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Tlgreg60 | @tlgreg60 | Aug 9, 2016
In reply to @tlgreg60 "Hi. I'm caught in a Doctor hamster wheel. I got three root canals and in and..." + (show)
@tlgreg60

Hi. I'm caught in a Doctor hamster wheel. I got three root canals and in and out implants. Now I just have implant no teeth daily throbbing. Dentist did brain MRI suspect MS I am 56. I seen neurologist yesterday. Now contrast MRI. I am allergic to most pain medications. I seriously don't know where to turn. Obviously this is a lot bigger than I'm saying because there have been multiple doctors involved and somehow each one of them have dropped the ball. I got three went on vacation and so did a nurse. Over 2 months and I'm still trying to figure out. First MRI was supposed to be with contrast and they screwed up. I feel very alone abandoned insecure scared in a new state in the south due too husbands career. Exhausted in Georgia.

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Hi. I did report. Doctors hospital here in Augusta have reached to me several times they have talked with the nurse. I wish she had been reprimanded and late today they called to see if they could reimburse me for out if picket expenses. Plys the radiologist contacted me. I'm hopeful they learned something and that I didn't contract something that hadn't revealed itself. The doctor that performed the procedure has not contacted me. Thanks for your reply.

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ladyjane85 | @ladyjane85 | Aug 10, 2016
In reply to @tlgreg60 "Hi. I'm caught in a Doctor hamster wheel. I got three root canals and in and..." + (show)
@tlgreg60

Hi. I'm caught in a Doctor hamster wheel. I got three root canals and in and out implants. Now I just have implant no teeth daily throbbing. Dentist did brain MRI suspect MS I am 56. I seen neurologist yesterday. Now contrast MRI. I am allergic to most pain medications. I seriously don't know where to turn. Obviously this is a lot bigger than I'm saying because there have been multiple doctors involved and somehow each one of them have dropped the ball. I got three went on vacation and so did a nurse. Over 2 months and I'm still trying to figure out. First MRI was supposed to be with contrast and they screwed up. I feel very alone abandoned insecure scared in a new state in the south due too husbands career. Exhausted in Georgia.

Jump to this post

to tlgregg60 Yes, one will go to eye dr, and dentist bec of area that<br>hurts. When trigeminal neuralgia was discovered in ER, they just gave<br>aspirin, so I continued in that vein. It can come back slightly off and<br>on. ladyjane86<br><br>

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Reneewise50 | @reneewise50 | Sep 10, 2016

I am 67 years old, woman and have Trigeminal neuralgia. I am currently taking Gabapentin, 250mg 3X day. This was originally for nerve pain in my back. It does not help the TN pain. I was also on a very low dose of amitriptilyn but got heart arrhythmia after a couple years. I am getting sever flair ups all day/night. I see a pain psychologist as needed for my back pain, and she is on a panel of doctors that treat all head pain too. I have to chart my TN pain for 30 days before I can get an appointment with a neurologist. I am going to call Monday and beg to get in earlier. Are there ANY home remedies or suggestions that can stop the intense, severe, burning and shooting pain? The longest it lasts is 5 minutes, and is consistent off and on every day now.

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5 replies
lamerex4 | @lamerex4 | Sep 12, 2016
In reply to @reneewise50 "I am 67 years old, woman and have Trigeminal neuralgia. I am currently taking Gabapentin, 250mg..." + (show)
@reneewise50

I am 67 years old, woman and have Trigeminal neuralgia. I am currently taking Gabapentin, 250mg 3X day. This was originally for nerve pain in my back. It does not help the TN pain. I was also on a very low dose of amitriptilyn but got heart arrhythmia after a couple years. I am getting sever flair ups all day/night. I see a pain psychologist as needed for my back pain, and she is on a panel of doctors that treat all head pain too. I have to chart my TN pain for 30 days before I can get an appointment with a neurologist. I am going to call Monday and beg to get in earlier. Are there ANY home remedies or suggestions that can stop the intense, severe, burning and shooting pain? The longest it lasts is 5 minutes, and is consistent off and on every day now.

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I wish I had something to offer for relief, but, alas, I do not. My father tried acupuncture but did not find it effective. His gamma knife procedure only offered relief for 5 weeks. He has been on doses of nortriptyline up to 80 mg. I did find a pillow on-line that is marketed for avoiding wrinkles. It is in the shape of a C so there is no pressure on his cheek. That seems to have helped greatly. He can't lay on his other side because of an old, painful total hip replacement. Thankfully he has been strike free for about 4 weeks now, but he is in heart failure. I encourage you to find a neurologist as quickly as possible who specializes in trigeminal neuralgia. At the young age of 67, I would not hesitate to go to Mayo for treatment. I hope you find relief soon.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 15, 2016
In reply to @reneewise50 "I am 67 years old, woman and have Trigeminal neuralgia. I am currently taking Gabapentin, 250mg..." + (show)
@reneewise50

I am 67 years old, woman and have Trigeminal neuralgia. I am currently taking Gabapentin, 250mg 3X day. This was originally for nerve pain in my back. It does not help the TN pain. I was also on a very low dose of amitriptilyn but got heart arrhythmia after a couple years. I am getting sever flair ups all day/night. I see a pain psychologist as needed for my back pain, and she is on a panel of doctors that treat all head pain too. I have to chart my TN pain for 30 days before I can get an appointment with a neurologist. I am going to call Monday and beg to get in earlier. Are there ANY home remedies or suggestions that can stop the intense, severe, burning and shooting pain? The longest it lasts is 5 minutes, and is consistent off and on every day now.

Jump to this post

Welcome to Connect @reneewise50. I'm so glad you connected with @lamerex4 and hope some of her suggestions helped.
Did you get an appointment on Monday? Have you found any pain relief?

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Reneewise50 | @reneewise50 | Sep 15, 2016

Thank you Colleen for asking. I have an appointment in October with the neurologist. I am on gabapentin and Baclofen right now but may need to tweak it a little as the pain gets quite severe at times. Right now it seems to be going away but not entirely. Two days ago I was having 25 to 30 flareups with severe shooting, stabbing pains, but today I only have about 20 so far. At least it's going in the right direction. Nothing really stops the pain, unfortunately.

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2 replies
bigred80 | @bigred80 | Oct 3, 2016

MY FACE STARTED OUT TO BE NUMB ON ONE SIDE BUT THEN BOTHE SIDES OF MY FACE ARE NOW NUMB HARD TO EAT AND I HAVE LOST 30 LBS IN THE LAST YEAR. IF YOU KNOW ANY NEW MEDICINE I WOULD LIKE TO KNOW IF IT WORKED NO ONE KNOW HOW THIS GET ON YOUR NEVERS I USE ICE PACKS.

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