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lamerex4
@lamerex4

Posts: 34
Joined: Jun 24, 2016

Trigeminal Neuralgia*

Posted by @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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REPLY

Posted by @colleenyoung, Jun 24, 2016

Hi @lamerex4,
It must be so hard to see your father suffer with this pain. Mayo Clinic’s info on trigeminal neuralgia treatments list a variety of anticonvulsants, antispasmodic agents or botox injections http://mayocl.in/1Mz18C8 You may wish to read this older discussion thread where Connect members @cagon @jwhite64 @calebba @jenkob @zane @omlee @nomore are talking about their experiences with treatment http://mayocl.in/28SOKk5

@Restless67 do you have any suggestions for @lamerex4?

@lamerex4, does your father live with you? Are you his main caregiver?

bigred80
@bigred80

Posts: 17
Joined: Oct 02, 2016
Posted by @bigred80, Oct 3, 2016

I HAVE NO HELP BUT ARE IN THE SAME VOTE BOTH SIDE OF MY FACE ARE NUMB AND IT DRIVES ME CRAZY. THE MEDS I HAVE TRIED HAVE NOT HELP I USE ICE PACKS I CARRY THEM EVERYWHERE. THAT SEAMS TO HELP SOME . IF ANYONE KNOWS ANY MEDS THAT MIGHT HELP I WOULD LIKE TO HEAR FROM THEM… I DON’T THINK TO MANY PEOPLE AND DRS. KNOW TO MUCH ABOUT THIS. I HAVE BEEN TO A SPECIALIST AND HE SAID DON’T HAVE SURGERY. THANKS

lamerex4
@lamerex4

Posts: 34
Joined: Jun 24, 2016
Posted by @lamerex4, Nov 8, 2016

Great news! We went to the cardiologist yesterday and she gave the all clear and encouraged us to come to Mayo! Dad is suffering quite badly again. Hopefully I can convince him it is worth the effort.

anneke
@anneke

Posts: 1
Joined: Nov 09, 2016
Posted by @anneke, Nov 8, 2016

Hello. One of my family members has the same diagnosis. I am curious about the reasons not to have surgery. Do you by any chance have an awesome web site that I would be able to research this diagnosis further?

bigred80
@bigred80

Posts: 17
Joined: Oct 02, 2016
Posted by @bigred80, Nov 10, 2016

to my understanding it may not be a success and the nerve they cut could damage the use of your face expressions. two dr. were against surgery. I have also read that it could come back, not sure that is true. I try to keep on the go and keep busy I carry a bag of ice where ever I go to use on my face. that helps

lamerex4
@lamerex4

Posts: 34
Joined: Jun 24, 2016
Posted by @lamerex4, Jun 24, 2016

Thank you for the link to the older thread; it did not come up when I did my search. My father does not live with me; he lives independently in a retirement community. He is very active and social when he is feeling well, so he is extremely frustrated that he cannot do the things he wants to do. His PCP does not appreciate the severity of the situation nor the urgency to find relief. I am a retired RN so I am a strong advocate for him and will not stop searching until he finds relief.

Posted by @colleenyoung, Jun 24, 2016

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

bethf5
@bethf5

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Joined: Jan 13, 2017
Posted by @bethf5, Fri, Jan 13 1:55am

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.

Posted by @colleenyoung, Fri, Jan 13 9:38am

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

bethf5
@bethf5

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Joined: Jan 13, 2017
Posted by @bethf5, Fri, Jan 13 8:15pm

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

Posted by @colleenyoung, Fri, Jan 13 9:27pm

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/

lamerex4
@lamerex4

Posts: 34
Joined: Jun 24, 2016
Posted by @lamerex4, Jun 24, 2016

It is my understanding that over time the drug loses its efficacy due to increase in the body’s tolerance. He was taking as much as 60 mg per day but still having pain plus at that dose he had slurred speech and had difficulty functioning.

caretothepeople
@caretothepeople

Posts: 63
Joined: Aug 10, 2015
Posted by @caretothepeople, Jun 27, 2016

It sounds like you may have consulted with more than one neurosurgeon, but in any event, getting a second (or third..) opinion might be helpful. There are new options for remote second opinions as well which could be helpful in your father’s case.

Keep track of his symptoms and write down their severity. Ask the doctors what your options are in terms of other treatment options and medications as well as what can be done to mitigate the side effects he is experiencing. This list of question might help: http://psychcentral.com/lib/questions-for-your-doctor-about-medications/

The Facial Pain Association may also be a source for information and support: http://fpa-support.org/

Tlgreg60
@tlgreg60

Posts: 7
Joined: Jul 23, 2015
Posted by @tlgreg60, Aug 4, 2016

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.

carol94
@carol94

Posts: 7
Joined: Jul 07, 2016
Posted by @carol94, Aug 5, 2016

I understand your feelings completely. I was in a 2 year evaluation period with 3 consecutive gastroenterologists before I was accurately diagnosed. What helped me the most was joining a chronic pain/chronic illness support group. There is a National Website on this group. I will try to find the URL and send the web address to you.

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