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.

Liked by lauren123, annamh

@trigeminalwoman38

Does anyone have this condition?

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@trigeminalwoman38

Hello @trigeminalwoman38, and welcome to Connect. I moved your discussion to an already active discussion called Trigeminal Neuralgia*. Here you will meet other members who also have TN. I recommend reading through the long discussion that has already taken place and jump in to the conversation! If you are replying by email, please hit the blue VIEW & REPLY button at the bottom of the email so that you can see the whole conversation taking place on Mayo Clinic Connect.

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@trigeminalwoman38

@trigeminalwoman38; I can’t say welcome to this group b/c I wouldn’t wish this condition on anyone. But I am glad you have found the others who suffer and understand your pain. Feel free to ask specific questions if you have them.

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@trigeminalwoman38

Hi trigeminalwoman38. I have this and I agree…I wouldn’t wish it on anyone either! It’s the worst pain I have ever had. Right now i think my meds must be working better, because I only have a few sharp pains, vs. the excruciating, sharp, shooting ones that last for 5-10 minutes. I was having the excruciating pains 20 + times a day. I am on carbamazepine . And Gabapentin. I also take 1/2 of a baclofen as needed. The meds take a week for me to work, and HATE the forgetfulness I experience as a side effect . BUT if it helps the Trigeminal nerve pain….ill take it!
I really hope you find a neurologist to help you. No one should have to experience this!

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@trigeminalwoman38

Trigeminalwoman38, Try HOT compresses as soon as you can. I can’t touch my face at first, but holding the hot washcloth very close to my face, and changing it out every minute, or when it starts to loose heat, helps. Pretty soon, I can put the hot compress directly on my face. It’s the ONLY thing that helps me. I still have to take the meds, but I do this for break through pain. I really hope you can find a good neurologist quickly to get some relief. So sorry you have this awful disease!

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@trigeminalwoman38, I posted a couple replays, but having trouble with my account. Hope you get them, as not many of us have this awful affliction!

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@trigeminalwoman38

@reneewise50 Thank You very much, Its helping.

Liked by Reneewise50

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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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I am very sorry to hear of your father having this horrible problem. I just posted about my 15 year journey with this monster, and I wish I had some answers for you because I am looking for some too. I was put on Lyrica in 2002 and it helped greatly except that I had a side effect from it – my eyesight became so blurry that I could not see, and that is one of the listed side effects. If you read my post you will find out what I’ve been through and how nothing has helped. How did your father – at his age – develop this? My pain doc said that if I live to be 80 or 90 (I’m 69) the nerve should wear itself out by then -oh joy I thought. I wish your father hope and pain-free days. He should be enjoying this time of his life, not living in pain.

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@colleenyoung

Your father is lucky to have you advocating for him. Is there any explanation why Amitriptyline stopped being effective after 10 years?

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Hi Colleen. I’m not sure where to post this to hopefully get some replies?
Hi. My husband had trigeminal neuralgia since 2007. Over the years he has tried many medication but the one that helped “the most” was Trileptal, an anti seizure medication. He started to have a problem with low sodium levels (which can cause stroke or seizures), so in 2014 he had a Gamma Knife procedure. No relief. Again he tried it in 2015 with no relief. So, he had the microvascular decompression surgery. The surgery went well but right away had a cerebral spinal leak that was mistreated. He then got bacterial spinal meningitis and was on antibiotics for three weeks. The CSF started up again so he had to go for another surgery to repair the dura leak so the fluid would stop leaking from his brain! Now for the last eight months he has been dealing with something we think is called anesthesia dolorosa which is numbness and tingling in the whole left side (the side of the problems) which is constant. His eyeball is completely numb and he is miserable. The Dr’s say there is no treatment. He is taking the Trileptal again (not helping much) but is having the low sodium issue again. He stated that the pain is like after leaving the dentist with numb side of your face and it starts to wake up but never completely wakes up. So, he’s dealing with constant numbness and tingling. He things this just might be worse than the intermittent trigeminal pain. Does anyone know of any treatment for anesthesia dolorosa?? Thank you.

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@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

Hello @mooneagle, welcome to Mayo Connect. I am sorry to hear you are suffering from so much pain. There is another discussion in the Brain & Nervous System Group – Trigeminal Neuralgia*. You can view it here – http://mayocl.in/2j8bIb4.

The newer posts are at the bottom of the discussion but if you have specific questions you may want to click the small search icon at the top of the window – looks like a magnifying glass.

Hoping you are able to find some answers that help.

John

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Hi @mooneagle, welcome to Connect. I’m glad you found this existing discussion on trigeminal neuralgia. (Thanks @johnbishop.) I took the liberty of moving your other message to this discussion so that you can meet other members talking about similar issues.

@lamerex4 @tlgreg60 @carol94 @ladyjane85 @uncbball @reneewise50 @bigred80 @kandigirl25 @sweetspirit21 @cagon @trigeminalwoman38. Will you join me in welcoming Mooneagle and another new member, @bethf5, just joined last night too. Beth’s husband has had trigeminal neuralgia since 2007.

Mooneagle, I encourage to read through the past posts on this discussion thread. How is your pain today?

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@colleenyoung

Your father is lucky to have you advocating for him. Is there any explanation why Amitriptyline stopped being effective after 10 years?

Jump to this post

Welcome @bethf5. This is a good place to post your question about trigeminal pain and anesthesia dolorosa. There are few management options for anesthesia dolorosa, however, I encourage to read this story about a Mayo Clinic patient, Amy, who participated in a Mayo clinical research trial investigating the use of neurostimulators for pain control with considerable success.

I’d also like to introduce you to @Restless67 who also lives with anesthesia dolorosa and talks about it in this discussion thread:
– Trigeminal neuritis/neuralgia treatment http://mayocl.in/2jfR6je

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@colleenyoung

Your father is lucky to have you advocating for him. Is there any explanation why Amitriptyline stopped being effective after 10 years?

Jump to this post

Thanks Colleen. Where can I find the story about Amy and the use of the stimulator?

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@colleenyoung

Your father is lucky to have you advocating for him. Is there any explanation why Amitriptyline stopped being effective after 10 years?

Jump to this post

My apologies, Beth. Here is the link to Amy’s story on Sharing Mayo Clinic http://sharing.mayoclinic.org/discussion/untangling-a-complex-medical-challenge/

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