lamerex4
@lamerex4
@lamerex4
Posts: 34
Joined: Jun 24, 2016
Trigeminal Neuralgia*
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.
lamerex4
@lamerex4
@lamerex4
Posts: 34
Joined: Jun 24, 2016
@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?
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.
Liked by Colleen Young, Connect Director, 2much2do, sjsmall5286
anneke
@anneke
@anneke
Posts: 1
Joined: Nov 09, 2016
@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?
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
@bigred80
Posts: 17
Joined: Oct 02, 2016
@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?
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
bigred80
@bigred80
@bigred80
Posts: 17
Joined: Oct 02, 2016
@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
YES I TAKE PAIN MEDS THAT DOES NOT HELP OR MAYBE IT WOULD BE WORSE WITHOUT THANKS
@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
Hi Big Red. I too am having a horrible time with my pain due to Trigeminal Neuralgia. Mine has been keeping me awake for the past 3 nights, so sleep is impossible. It seems like a couple hours after I fall asleep, it starts. Then every hour on the hour, until I get out of bed for a few hours and start moving around. I’m SOOO tired! I’ve been on Gabepentin for 3 1/2 years, 3X day. It doesn’t help. My doctor has me on Tegritol now.JUST started the nighttime does, so hoping and praying it helps! My nighttime pain started a few days ago when our weather abruptly got 20 degrees colder with snow.
I too would do ANYTHING, ever the medical marijuana if it would help.
For me, really hot waster in my mouth on the pain side seems to help SOMEWHAT.
@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.
How do you control the pain? I’ve tried so many things, but would be interested in knowing how others manage. Lately, mine has been keeping me up ALL night! Even if I sleep in the day, it starts up.
@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.
I had pain all the time hard to brush my teeth shower eat or drink anything. lived on applesauce grits & soup. Tegrital helped somewhat but I was so drugged up I couldn’t work or drive. I had a procedure done took about ten minutes where they burn the nerve radio frequency lesioning. I am off medication life is back to normal . my face feels like I had dental work on one side and tongue tingling took about a week for my speech to return to normal. its been almost a year I was told the pain may come back if so I will just go back and redo.
Liked by katydid17
lamerex4
@lamerex4
@lamerex4
Posts: 34
Joined: Jun 24, 2016
lamerex4
@lamerex4
@lamerex4
Posts: 34
Joined: Jun 24, 2016
@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.
The sleep deprivation is what bothers my dad the most. I did find a pillow for him that is shaped like a C; I think it is designed to avoid wrinkles! But it also avoids pressure on the cheek while he is sleeping. Many nights he resorts to his recliner.
Liked by hjlucchi
bigred80
@bigred80
@bigred80
Posts: 17
Joined: Oct 02, 2016
@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.
FACIAL PAIN I WAS TOLD NOT TO HAVE SURGERY OR IS THIS CALLED SURGERY WHAT KIND OF DR. DID THIS?? THEY SAID MY FACE MIGHT GET PEARLIZED. AND NOT TO DO IT.???
lamerex4
@lamerex4
@lamerex4
Posts: 34
Joined: Jun 24, 2016
@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.
@bigred80 I don’t know who your comment is directed to or what it is in reference to, but this link might help explain the procedure my father and others have had. It isn’t really a surgical procedure, but a neurosurgeon and radiologic interventionist usually collaborate on the procedure. http://www.mayoclinic.org/tests-procedures/stereotactic-radiosurgery/home/ovc-20130212. The surgery your physician might have been referring to is Microvascular Decompression https://www.urmc.rochester.edu/neurosurgery/for-patients/treatments/microvascular-decompression.aspx. Either procedure can result in loss of sensation of movement of some facial muscles (similar to Bell’s Palsy) but a lot of people choose to chance these complications rather than live with the pain of Trigeminal Neuralgia. I hope this helps explain things.
bigred80
@bigred80
@bigred80
Posts: 17
Joined: Oct 02, 2016
@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.
THANKS I WILL LOOK INTO THIS. HAVE A GREAT DAY
@lamerex4
In reply to @bigred80
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.