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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carmelo1morrone | @carmelo1morrone | Jan 26, 2018
In reply to @suzeee39 "I am sorry, I feel bad for anyone who has to endure this!" + (show)
@suzeee39

I am sorry, I feel bad for anyone who has to endure this!

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where did you get it done and by who and when. Those reply will give some insight as I was not going to just let anyone work on me. I did not hire the first surgeon, who I still call the snake oil salesman, I waited a few months just to see my surgeon and I knew it was worth the wait. I could tell he cares and it shows with his professional way his whole staff treats you, you'll know and I was right. My doctor did not make any promises and didn't sugar coat anything, but also explain everything the goods and the bads. I hope my life stays healthy, but if this returns I will have to address it when that happens. If it does, I would still seek my doctor I have today and get his feedback on what my choices are.

REPLY
bobbich | @bobbich | Feb 12, 2018
In reply to @trigeminalwoman38 "Hello" + (show)
@trigeminalwoman38

Hello

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I’m new to this group too, I go to Cleveland February 20 for my TN I’ve had it for almost 2 years I’ve lost 40lbs as of now I too had a tooth pulled and 2 weeks later the pain started its awful I cry all the time my face swells and my eye, I have a 11 year old boy and I hate it for him , I’ve missed a lot of his games because of the pain and not feeling like doing anything, I have Lyrica to take but it makes me so dopey I hate it and it really doesn’t help me I was on Percocet and that helped for hrs at a time but now you have to go to a pain mngt to get pain meds and I don’t even feel like doing that so I have nothing pain meds right now! I will be glad to go to Cleveland, this is terrible that nothing can be done to make it go away for good ! I hope you find relief! I sleep in a recliner and hot rags on my face help !

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 12, 2018
In reply to @trigeminalwoman38 "Hello" + (show)
@trigeminalwoman38

Hello

Jump to this post

Hello @bobbich

I see that this is your first post on Connect and I would like to welcome you. I am a volunteer mentor with Connect. I see that you will be going to Cleveland Clinic this month to get some help with TN pain. This sounds terribly uncomfortable! I do hope that you can find some relief.

From what I can understand, this started after you had a tooth pulled? Did your dentist or oral surgeon offer you any help or suggestions?

Connect is a great place to find help, support and encouragement. I look forward to hearing from you again.

Teresa

REPLY
stfnwtl89 | @stfnwtl89 | Feb 26, 2018
In reply to @mooneagle "Is there anyone in this particular group who has trigeminal neuralgia? I have been suffering with..." + (show)
@mooneagle

Is there anyone in this particular group who has trigeminal neuralgia? I have been suffering with it for 16 years and I just about can't take the pain anymore. The pain is one-sided, as it usually is, and it covers the whole right side of my face from the chin up to my forehead. It affects my right eye when I have the pain and I can't see very good at that time. It was caused by a dentist hitting the trigeminal nerve (5th cranial nerve) while giving me a novocaine shot in my bottom right jaw. Oh, he joked and said the pain will stop after the novocaine takes affect. It took over a year for me to figure out that the excruciating pain I was having was not due to bad teeth. I have been going monthly to a pain management doctor for the past 15 years and all he could do for me was try every medicine that treats nerve pain, a whole slew of anti-epileptic drugs (didn't work), morphine, fentanyl, oxycodone, methadone, and other I can't remember. Now for the past 12 years I have been on Norco 10 mg with 325 mg of acetometaphin along with Valium, Nothing really works, so he has allowed me to take up to six Norco tablets and 3 Valiums in one day, and then use a sleeping pill (Seroquel 20mg) if the pain hasn't calmed down. I sleep a lot. There are days when I have only minimal pain - 5 to 6 on the pain scale - but the bad days are 10+++ (not making this up). Eating, talking and the wind are the triggers for this pain, so I'm somewhat stuck in the house unless it is warm and not windy. I have had 10 stellate ganglion blocks and they did nothing. So his only other idea was to sever the nerve. The trigeminal nerve gives feeling to the face, and severing the nerve is really not an option for me because he said the right side of my face might droop a bit, and also that the nerve could grow back. He said that, if it were to grow back, it would be "mad". That's the word he used ... "mad" ... because that's the term used in relation to nerves that are fiddled with. So I'm wondering if anyone else has this monster of a nervous system disorder and if anyone has had any relief. Thanks for your time.

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My mom suffers from this condition and was caused by a dentist. She has had cyber knife and another procedure. We have an appt. the 8th of March with a new neurologist to see if there is anything else available or in general get a fresh perspective. Med's have not been helping my mom either and her pain dr. wants to back her off the medications she is currently on and that has just snowballed into a disaster.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 26, 2018
In reply to @mooneagle "Is there anyone in this particular group who has trigeminal neuralgia? I have been suffering with..." + (show)
@mooneagle

Is there anyone in this particular group who has trigeminal neuralgia? I have been suffering with it for 16 years and I just about can't take the pain anymore. The pain is one-sided, as it usually is, and it covers the whole right side of my face from the chin up to my forehead. It affects my right eye when I have the pain and I can't see very good at that time. It was caused by a dentist hitting the trigeminal nerve (5th cranial nerve) while giving me a novocaine shot in my bottom right jaw. Oh, he joked and said the pain will stop after the novocaine takes affect. It took over a year for me to figure out that the excruciating pain I was having was not due to bad teeth. I have been going monthly to a pain management doctor for the past 15 years and all he could do for me was try every medicine that treats nerve pain, a whole slew of anti-epileptic drugs (didn't work), morphine, fentanyl, oxycodone, methadone, and other I can't remember. Now for the past 12 years I have been on Norco 10 mg with 325 mg of acetometaphin along with Valium, Nothing really works, so he has allowed me to take up to six Norco tablets and 3 Valiums in one day, and then use a sleeping pill (Seroquel 20mg) if the pain hasn't calmed down. I sleep a lot. There are days when I have only minimal pain - 5 to 6 on the pain scale - but the bad days are 10+++ (not making this up). Eating, talking and the wind are the triggers for this pain, so I'm somewhat stuck in the house unless it is warm and not windy. I have had 10 stellate ganglion blocks and they did nothing. So his only other idea was to sever the nerve. The trigeminal nerve gives feeling to the face, and severing the nerve is really not an option for me because he said the right side of my face might droop a bit, and also that the nerve could grow back. He said that, if it were to grow back, it would be "mad". That's the word he used ... "mad" ... because that's the term used in relation to nerves that are fiddled with. So I'm wondering if anyone else has this monster of a nervous system disorder and if anyone has had any relief. Thanks for your time.

Jump to this post

@stfnwtl89 you mention that the pain meds are not working and that the doctor has suggested "backing off the medications". Is she tapering off a number of medications? Is it the withdrawal that is snowballing into a disaster?

REPLY
stfnwtl89 | @stfnwtl89 | Feb 27, 2018
In reply to @mooneagle "Is there anyone in this particular group who has trigeminal neuralgia? I have been suffering with..." + (show)
@mooneagle

Is there anyone in this particular group who has trigeminal neuralgia? I have been suffering with it for 16 years and I just about can't take the pain anymore. The pain is one-sided, as it usually is, and it covers the whole right side of my face from the chin up to my forehead. It affects my right eye when I have the pain and I can't see very good at that time. It was caused by a dentist hitting the trigeminal nerve (5th cranial nerve) while giving me a novocaine shot in my bottom right jaw. Oh, he joked and said the pain will stop after the novocaine takes affect. It took over a year for me to figure out that the excruciating pain I was having was not due to bad teeth. I have been going monthly to a pain management doctor for the past 15 years and all he could do for me was try every medicine that treats nerve pain, a whole slew of anti-epileptic drugs (didn't work), morphine, fentanyl, oxycodone, methadone, and other I can't remember. Now for the past 12 years I have been on Norco 10 mg with 325 mg of acetometaphin along with Valium, Nothing really works, so he has allowed me to take up to six Norco tablets and 3 Valiums in one day, and then use a sleeping pill (Seroquel 20mg) if the pain hasn't calmed down. I sleep a lot. There are days when I have only minimal pain - 5 to 6 on the pain scale - but the bad days are 10+++ (not making this up). Eating, talking and the wind are the triggers for this pain, so I'm somewhat stuck in the house unless it is warm and not windy. I have had 10 stellate ganglion blocks and they did nothing. So his only other idea was to sever the nerve. The trigeminal nerve gives feeling to the face, and severing the nerve is really not an option for me because he said the right side of my face might droop a bit, and also that the nerve could grow back. He said that, if it were to grow back, it would be "mad". That's the word he used ... "mad" ... because that's the term used in relation to nerves that are fiddled with. So I'm wondering if anyone else has this monster of a nervous system disorder and if anyone has had any relief. Thanks for your time.

Jump to this post

Yes that has been a major issue since Christmas, so now in addition to the constant pain as mentioned by several here in this forum. I've heard daggers, burning to the point feels like on fire as described by my family member. This has been 15+ years and started with a dentist. 2+ years ago a new pain mgt clinic was introduced by pcp. It started out as hopeful and for 1+ different combo's have been tried but nothing seems to be the right mix. So 6months ago the pain dr. decided to initiate a weaning and stated he as at a loss and has offered alternative medicine and a referal to a therapist. The weaning has been dreadful and the pain has intensified. I have an appt. with a new neurologist scheduled in less thank a week, this will be new hospital and new group of doctors. I did ask the pain mgt dr. if his goal was to manage pain or was it a personal mission to remove opiods and benzo's all together. Through the years there have been several procedures including gamma and cyber, now the weaning process at 68yrs old. I just wonder what is being gained.

REPLY
stfnwtl89 | @stfnwtl89 | Feb 27, 2018
In reply to @mooneagle "Is there anyone in this particular group who has trigeminal neuralgia? I have been suffering with..." + (show)
@mooneagle

Is there anyone in this particular group who has trigeminal neuralgia? I have been suffering with it for 16 years and I just about can't take the pain anymore. The pain is one-sided, as it usually is, and it covers the whole right side of my face from the chin up to my forehead. It affects my right eye when I have the pain and I can't see very good at that time. It was caused by a dentist hitting the trigeminal nerve (5th cranial nerve) while giving me a novocaine shot in my bottom right jaw. Oh, he joked and said the pain will stop after the novocaine takes affect. It took over a year for me to figure out that the excruciating pain I was having was not due to bad teeth. I have been going monthly to a pain management doctor for the past 15 years and all he could do for me was try every medicine that treats nerve pain, a whole slew of anti-epileptic drugs (didn't work), morphine, fentanyl, oxycodone, methadone, and other I can't remember. Now for the past 12 years I have been on Norco 10 mg with 325 mg of acetometaphin along with Valium, Nothing really works, so he has allowed me to take up to six Norco tablets and 3 Valiums in one day, and then use a sleeping pill (Seroquel 20mg) if the pain hasn't calmed down. I sleep a lot. There are days when I have only minimal pain - 5 to 6 on the pain scale - but the bad days are 10+++ (not making this up). Eating, talking and the wind are the triggers for this pain, so I'm somewhat stuck in the house unless it is warm and not windy. I have had 10 stellate ganglion blocks and they did nothing. So his only other idea was to sever the nerve. The trigeminal nerve gives feeling to the face, and severing the nerve is really not an option for me because he said the right side of my face might droop a bit, and also that the nerve could grow back. He said that, if it were to grow back, it would be "mad". That's the word he used ... "mad" ... because that's the term used in relation to nerves that are fiddled with. So I'm wondering if anyone else has this monster of a nervous system disorder and if anyone has had any relief. Thanks for your time.

Jump to this post

@colleenyoung

REPLY
scarlettkittaen | @scarlettkittaen | Feb 27, 2018
In reply to @mooneagle "Is there anyone in this particular group who has trigeminal neuralgia? I have been suffering with..." + (show)
@mooneagle

Is there anyone in this particular group who has trigeminal neuralgia? I have been suffering with it for 16 years and I just about can't take the pain anymore. The pain is one-sided, as it usually is, and it covers the whole right side of my face from the chin up to my forehead. It affects my right eye when I have the pain and I can't see very good at that time. It was caused by a dentist hitting the trigeminal nerve (5th cranial nerve) while giving me a novocaine shot in my bottom right jaw. Oh, he joked and said the pain will stop after the novocaine takes affect. It took over a year for me to figure out that the excruciating pain I was having was not due to bad teeth. I have been going monthly to a pain management doctor for the past 15 years and all he could do for me was try every medicine that treats nerve pain, a whole slew of anti-epileptic drugs (didn't work), morphine, fentanyl, oxycodone, methadone, and other I can't remember. Now for the past 12 years I have been on Norco 10 mg with 325 mg of acetometaphin along with Valium, Nothing really works, so he has allowed me to take up to six Norco tablets and 3 Valiums in one day, and then use a sleeping pill (Seroquel 20mg) if the pain hasn't calmed down. I sleep a lot. There are days when I have only minimal pain - 5 to 6 on the pain scale - but the bad days are 10+++ (not making this up). Eating, talking and the wind are the triggers for this pain, so I'm somewhat stuck in the house unless it is warm and not windy. I have had 10 stellate ganglion blocks and they did nothing. So his only other idea was to sever the nerve. The trigeminal nerve gives feeling to the face, and severing the nerve is really not an option for me because he said the right side of my face might droop a bit, and also that the nerve could grow back. He said that, if it were to grow back, it would be "mad". That's the word he used ... "mad" ... because that's the term used in relation to nerves that are fiddled with. So I'm wondering if anyone else has this monster of a nervous system disorder and if anyone has had any relief. Thanks for your time.

Jump to this post

God Bless you; a Prayer has just been said on your behalf. May you have Peace, Comfort, Painfree Living, Hope, and, Faith.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 27, 2018
In reply to @mooneagle "Is there anyone in this particular group who has trigeminal neuralgia? I have been suffering with..." + (show)
@mooneagle

Is there anyone in this particular group who has trigeminal neuralgia? I have been suffering with it for 16 years and I just about can't take the pain anymore. The pain is one-sided, as it usually is, and it covers the whole right side of my face from the chin up to my forehead. It affects my right eye when I have the pain and I can't see very good at that time. It was caused by a dentist hitting the trigeminal nerve (5th cranial nerve) while giving me a novocaine shot in my bottom right jaw. Oh, he joked and said the pain will stop after the novocaine takes affect. It took over a year for me to figure out that the excruciating pain I was having was not due to bad teeth. I have been going monthly to a pain management doctor for the past 15 years and all he could do for me was try every medicine that treats nerve pain, a whole slew of anti-epileptic drugs (didn't work), morphine, fentanyl, oxycodone, methadone, and other I can't remember. Now for the past 12 years I have been on Norco 10 mg with 325 mg of acetometaphin along with Valium, Nothing really works, so he has allowed me to take up to six Norco tablets and 3 Valiums in one day, and then use a sleeping pill (Seroquel 20mg) if the pain hasn't calmed down. I sleep a lot. There are days when I have only minimal pain - 5 to 6 on the pain scale - but the bad days are 10+++ (not making this up). Eating, talking and the wind are the triggers for this pain, so I'm somewhat stuck in the house unless it is warm and not windy. I have had 10 stellate ganglion blocks and they did nothing. So his only other idea was to sever the nerve. The trigeminal nerve gives feeling to the face, and severing the nerve is really not an option for me because he said the right side of my face might droop a bit, and also that the nerve could grow back. He said that, if it were to grow back, it would be "mad". That's the word he used ... "mad" ... because that's the term used in relation to nerves that are fiddled with. So I'm wondering if anyone else has this monster of a nervous system disorder and if anyone has had any relief. Thanks for your time.

Jump to this post

Sounds dreadful, @stfnwtl89 I'm encouraged to hear that you are seeking a second opinion and will be working with a new set of doctors. Weaning of drugs is a grueling and long journey, and one that requires much patience.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 10, 2018
In reply to @trigeminalwoman38 "Hello" + (show)
@trigeminalwoman38

Hello

Jump to this post

Hello @bobbich

As I recall from your first post, you had an appointment on 2/20 at Cleveland Clinic regarding your TN pain. I hope that you were able to get some help.

I hope you are either feeling better or have a plan in place to deal with this pain. I would enjoy hearing from you again.

Teresa

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