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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.

bigred80 | @bigred80 | Nov 1, 2016
In reply to @colleenyoung "Welcome @kandigirl25, I'm glad to see that you connected with @lamerex4. You'll notice that I moved..." + (show)
@colleenyoung

Welcome @kandigirl25, I’m glad to see that you connected with @lamerex4. You’ll notice that I moved your message to an already existing discussion where a group of Connect members are talking about living with trigeminal neuralgia. In addition to Lamerex4, you’ll meet @bigred80 @tlgreg60 @reneewise50 @ladyjane85 and @uncbball.

I like Lamerex’s suggestion of finding a doctor who understands TN. Kandigirl, what treatments have you had thus far?

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only gabapentin and duloxetine have had the problem almost 2 years I use hot packs and ice packs that helps a lot carry them where ever I go. keeping busy helps been to two specialist they said no surgery. I just got a new cream to apply to face. I may go to mayo clinic or Cleveland clinic. help if you know anything better good luck thanks

REPLY
Moderator
Colleen Young | @colleenyoung | Nov 1, 2016
In reply to @colleenyoung "Welcome @kandigirl25, I'm glad to see that you connected with @lamerex4. You'll notice that I moved..." + (show)
@colleenyoung

Welcome @kandigirl25, I’m glad to see that you connected with @lamerex4. You’ll notice that I moved your message to an already existing discussion where a group of Connect members are talking about living with trigeminal neuralgia. In addition to Lamerex4, you’ll meet @bigred80 @tlgreg60 @reneewise50 @ladyjane85 and @uncbball.

I like Lamerex’s suggestion of finding a doctor who understands TN. Kandigirl, what treatments have you had thus far?

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BigRed, should you wish to get a second opinion at Mayo Clinic, here are the contact numbers to call http://mayocl.in/1mtmR63. What is the new cream you are using? Is it helping?

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bigred80 | @bigred80 | Nov 2, 2016

THE NEW CREAM I AM USING IS DICLOFENAC SODIUM TOPICAL GEL HAVEN’T USED IT LONG ENOUGH TO TELL BUT MIGHT BE A LITTLE BETTER BUT AS I AM WRITING THIS I AM HAVING TINGLEING IN BOTH CHEEKS. LIKE EVERYONE ELSE YOU LEARN TO LIVE WITH IT. I HAVE THOUGH ABOUT MARIJUANA WHAT DO YOU THINK? MY CHEEKS ARE SOWLLEN AND I BITE MY CHEEKS AND LIPS A LOT. DOES ANYONE ELSE HAVE THAT PROBLEM? THANKS

REPLY
7 replies
lamerex4 | @lamerex4 | Nov 2, 2016

My dad does not have swelling and he only has it on one side. He is too old (92) and has congestive heart failure so he is not a candidate for surgery. I don’t know how anyone can learn to live with such extreme and unpredictable pain. I encourage everyone who is otherwise healthy to go to a major medical center like Mayo or Cleveland for a second opinion and the best treatment possible at this time.

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sweetspirit21 | @sweetspirit21 | Nov 3, 2016

Hello to everyone. I go by the name Sweetspirit. I have been suffering from TN for about seven years. I am happy to join a support group.

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8 replies
Justin McClanahan | @JustinMcClanahan | Nov 3, 2016
In reply to @sweetspirit21 "Hello to everyone. I go by the name Sweetspirit. I have been suffering from TN for..." + (show)
@sweetspirit21

Hello to everyone. I go by the name Sweetspirit. I have been suffering from TN for about seven years. I am happy to join a support group.

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Hello Sweetspirit, and welcome to Connect! Thank you for sharing your ailment with other members.

I moved your discussion post to a very active existing discussion on Trigeminal Neuralgia. Here you will be able to read through a large discussion taking place on many different aspects of living with Trigeminal Neuralgia.

Is there anything specific about TN you would like to ask other members about and discuss?

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bigred80 | @bigred80 | Nov 7, 2016
In reply to @bigred80 "THE NEW CREAM I AM USING IS DICLOFENAC SODIUM TOPICAL GEL HAVEN'T USED IT LONG ENOUGH..." + (show)
@bigred80

THE NEW CREAM I AM USING IS DICLOFENAC SODIUM TOPICAL GEL HAVEN’T USED IT LONG ENOUGH TO TELL BUT MIGHT BE A LITTLE BETTER BUT AS I AM WRITING THIS I AM HAVING TINGLEING IN BOTH CHEEKS. LIKE EVERYONE ELSE YOU LEARN TO LIVE WITH IT. I HAVE THOUGH ABOUT MARIJUANA WHAT DO YOU THINK? MY CHEEKS ARE SOWLLEN AND I BITE MY CHEEKS AND LIPS A LOT. DOES ANYONE ELSE HAVE THAT PROBLEM? THANKS

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my new cream is diclofenac sodium topical gel never notice any change. ice packs and heat packs help the most. learning to live with it as I do all my pain and I am sure everyone does the same. keeping busy helps the most but have lost 25lbs in the past year. can’t eat a lot of things because of the chewing. good luck to all and have a great day. thanks

REPLY
Moderator
Colleen Young | @colleenyoung | Nov 7, 2016
In reply to @bigred80 "THE NEW CREAM I AM USING IS DICLOFENAC SODIUM TOPICAL GEL HAVEN'T USED IT LONG ENOUGH..." + (show)
@bigred80

THE NEW CREAM I AM USING IS DICLOFENAC SODIUM TOPICAL GEL HAVEN’T USED IT LONG ENOUGH TO TELL BUT MIGHT BE A LITTLE BETTER BUT AS I AM WRITING THIS I AM HAVING TINGLEING IN BOTH CHEEKS. LIKE EVERYONE ELSE YOU LEARN TO LIVE WITH IT. I HAVE THOUGH ABOUT MARIJUANA WHAT DO YOU THINK? MY CHEEKS ARE SOWLLEN AND I BITE MY CHEEKS AND LIPS A LOT. DOES ANYONE ELSE HAVE THAT PROBLEM? THANKS

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Thanks for reporting back BigRed. I’m sorry the cream didn’t help more. What can you do to get the calories you need? Have you seen a nutritionist?

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bigred80 | @bigred80 | Nov 8, 2016
In reply to @bigred80 "THE NEW CREAM I AM USING IS DICLOFENAC SODIUM TOPICAL GEL HAVEN'T USED IT LONG ENOUGH..." + (show)
@bigred80

THE NEW CREAM I AM USING IS DICLOFENAC SODIUM TOPICAL GEL HAVEN’T USED IT LONG ENOUGH TO TELL BUT MIGHT BE A LITTLE BETTER BUT AS I AM WRITING THIS I AM HAVING TINGLEING IN BOTH CHEEKS. LIKE EVERYONE ELSE YOU LEARN TO LIVE WITH IT. I HAVE THOUGH ABOUT MARIJUANA WHAT DO YOU THINK? MY CHEEKS ARE SOWLLEN AND I BITE MY CHEEKS AND LIPS A LOT. DOES ANYONE ELSE HAVE THAT PROBLEM? THANKS

Jump to this post

TODAY IS VERY VERY BAD WOKE UP IN VERY BAD PAIN PUT ICE PACKS ON IMMEDIATELY. AND TOOK PAIN PILLS ALSO MY GABEPENTIN I AM NOT SURE THAT HELPS AT ALL. I SURE WISH SOMEONE OUT THERE COULD HELP. I HAVE BEEN TO MAYO CLINIC WHEN I HAD CANCER THINKING ABOUT GOING AGAIN. ALSO THINKING ABOUT MEDICAL MARIJUANA ANYTHING TO STOP THIS FEELING. SLEEP IS THE ONLY WAY TO GET OUT OF THIS FEELING. ANY MORE SUGGESTIONS. THANKS

REPLY
lamerex4 | @lamerex4 | Nov 8, 2016
In reply to @bigred80 "THE NEW CREAM I AM USING IS DICLOFENAC SODIUM TOPICAL GEL HAVEN'T USED IT LONG ENOUGH..." + (show)
@bigred80

THE NEW CREAM I AM USING IS DICLOFENAC SODIUM TOPICAL GEL HAVEN’T USED IT LONG ENOUGH TO TELL BUT MIGHT BE A LITTLE BETTER BUT AS I AM WRITING THIS I AM HAVING TINGLEING IN BOTH CHEEKS. LIKE EVERYONE ELSE YOU LEARN TO LIVE WITH IT. I HAVE THOUGH ABOUT MARIJUANA WHAT DO YOU THINK? MY CHEEKS ARE SOWLLEN AND I BITE MY CHEEKS AND LIPS A LOT. DOES ANYONE ELSE HAVE THAT PROBLEM? THANKS

Jump to this post

I am so very sorry for your pain. Do you take anything for inflammation? A 600mg or 800mg Ibuprofen might calm down the inflammation and help take the edge off the pain. I hear the desperation in your voice; I would definitely go to Mayo for an evaluation.

REPLY
lamerex4 | @lamerex4 | Nov 8, 2016
In reply to @colleenyoung "Hi @lamerex4, It must be so hard to see your father suffer with this pain. Mayo..." + (show)
@colleenyoung

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?

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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.

REPLY
anneke | @anneke | Nov 8, 2016
In reply to @colleenyoung "Hi @lamerex4, It must be so hard to see your father suffer with this pain. Mayo..." + (show)
@colleenyoung

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?

Jump to this post

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?

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