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

@amberpep

I get what is called trigeminal neuralgia or ice pick headaches. I've read everything I could on it and it seems a lot of folks over 50 get them. Excuse my language, but they are hellish. It's a sharp, stabbing pain on the left, or right, side of my head, usually somewhere over the ear or right behind it. It's as if someone stabs me with a hot poker. I take Rx Motrin and since I started taking Lamictal, they are much less frequent. When I've tried to tell my family about this, they just blow it off like it was nothing ….. well, if they got them they'd soon feel differently.
abby

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I’m so sorry Amber that your family doesn’t understand. Hopefully John’s link will help them and thereby help you too.

It’s hard to believe we ended up with the most miserable pain practically on the planet. I’m Very thankful to have discovered that too much salt, stress and caffeine where my biggest triggers. Thankfully ibuprofen was as far as I had to go with pain meds. My main cure has been a change of diet and managing stress. I wish it was that simple for everybody.

Hoping and praying you find relief and support from your family.
Respectfully,
Kim O.

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@johnbishop

Hi Jenn @jennheadlee, Welcome to Mayo Clinic Connect. There is another discussion for Trigeminal Neuralgia where your post will receive more visibility and you will be able to meet other members discussing the condtion. I'm tagging our moderator @lisalucier to see if we should move your discussion into the following discussion. While we wait you may want to read through the discussion and meet some of the other members.

Groups > Brain & Nervous System > Trigeminal Neuralgia*
https://connect.mayoclinic.org/discussion/trigeminal-neuralgia-2273cc/

Are you able to share a little more about the symptoms you are having now?

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 are talking about their experiences with treatment
http://mayocl.in/28SOKk5

John

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My mother is suffering greatly with TN. She is my Dad’s primary caretaker and she is at the point where we need to look at different options to help her. She got the diagnosis at years ago from a neurologist in Savannah, Georgia. At that time he mentioned going in to cut the nerves. This frightened her (and he did not give very good statistics on it helping). She has been treating the flare ups with gabapentin and tramadol when it flares up. It seems to be flaring up more frequently and lasting longer (we think possible due to the stress of caring for my father). This current episode she actually took Percocet and ended up vomiting which obviously was misery with the pain that she is already in. She decided at this point that we need to find an expert and try to find something else to do! She is located in Statesboro, Georgia (about an hour from Savannah). Some people have told us to go to Mayo in Jacksonville, Fl. But we direction on who to go to and what would be a reasonable next step.

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@annpie88

My mother is suffering greatly with TN. She is my Dad’s primary caretaker and she is at the point where we need to look at different options to help her. She got the diagnosis at years ago from a neurologist in Savannah, Georgia. At that time he mentioned going in to cut the nerves. This frightened her (and he did not give very good statistics on it helping). She has been treating the flare ups with gabapentin and tramadol when it flares up. It seems to be flaring up more frequently and lasting longer (we think possible due to the stress of caring for my father). This current episode she actually took Percocet and ended up vomiting which obviously was misery with the pain that she is already in. She decided at this point that we need to find an expert and try to find something else to do! She is located in Statesboro, Georgia (about an hour from Savannah). Some people have told us to go to Mayo in Jacksonville, Fl. But we direction on who to go to and what would be a reasonable next step.

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We have heard that BOTOX could be an option but do not know about how to go about finding a provider that is trained specifically in Tn.

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@annpie88

My mother is suffering greatly with TN. She is my Dad’s primary caretaker and she is at the point where we need to look at different options to help her. She got the diagnosis at years ago from a neurologist in Savannah, Georgia. At that time he mentioned going in to cut the nerves. This frightened her (and he did not give very good statistics on it helping). She has been treating the flare ups with gabapentin and tramadol when it flares up. It seems to be flaring up more frequently and lasting longer (we think possible due to the stress of caring for my father). This current episode she actually took Percocet and ended up vomiting which obviously was misery with the pain that she is already in. She decided at this point that we need to find an expert and try to find something else to do! She is located in Statesboro, Georgia (about an hour from Savannah). Some people have told us to go to Mayo in Jacksonville, Fl. But we direction on who to go to and what would be a reasonable next step.

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Hello @annpie88, welcome to Connect. I can't imagine how difficult it must be for your mother to be your dads primary caregiver and needing help herself. Thank you for being an advocate for her. I know stress was one of my triggers for neuropathy but I only have numbness for a symptom and not pain. Here is an explanation of possible triggers for flare ups which I think could also apply to Trigeminal Neuralgia.

What Makes Neuropathy Flare up? Here Are 4 Common Causes and The Top 3 Solutions
https://nervepainguide.org/neuropathy-flare-ups/

If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

Has her doctor made any suggestions or reviewed her medications?

Liked by kim_o

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@annpie88

We have heard that BOTOX could be an option but do not know about how to go about finding a provider that is trained specifically in Tn.

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@annpie88, Here is an article from 2017 which may provide some helpful information about botox treatment.

Botulinum toxin in the treatment of trigeminal neuralgia
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5626289/

Mayo Clinic has some information on diagnosis and treatment here:
https://www.mayoclinic.org/diseases-conditions/trigeminal-neuralgia/diagnosis-treatment/drc-20353347

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@johnbishop

Hello @annpie88, welcome to Connect. I can't imagine how difficult it must be for your mother to be your dads primary caregiver and needing help herself. Thank you for being an advocate for her. I know stress was one of my triggers for neuropathy but I only have numbness for a symptom and not pain. Here is an explanation of possible triggers for flare ups which I think could also apply to Trigeminal Neuralgia.

What Makes Neuropathy Flare up? Here Are 4 Common Causes and The Top 3 Solutions
https://nervepainguide.org/neuropathy-flare-ups/

If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

Has her doctor made any suggestions or reviewed her medications?

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Thank you so much. Years ago she saw a neurologist that mention a type of surgery where he would cut a nerve. He made it sound like it was a “crap shoot” and may or may not get the correct nerve. She has been treating with gabapentin when she feels that a flare up is coming on. She says that she can not take the gabapentin daily or that she would be a complete zombie. We weren’t sure if Mayo required prior authorization or referral from her current doctor but looks like no referral is necessary. I think we need to check on insurance at this point.

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@annpie88

Thank you so much. Years ago she saw a neurologist that mention a type of surgery where he would cut a nerve. He made it sound like it was a “crap shoot” and may or may not get the correct nerve. She has been treating with gabapentin when she feels that a flare up is coming on. She says that she can not take the gabapentin daily or that she would be a complete zombie. We weren’t sure if Mayo required prior authorization or referral from her current doctor but looks like no referral is necessary. I think we need to check on insurance at this point.

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Maybe you can get a CBD (non-psychoactive) prescription from the doctor. Although it has been found that Full Spectrum cbd produces little to no side effects, whereas isolated CBD (from prescription) has more possible side effects. If dr can’t help, look for Organic, 3rd party tested / GMP brands on the market. Never, ever buy from Amazon. Dr Oz said even buying it from a Pharmacy doesn’t ensure there is CBD in the product. 😞

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@amberpep

Please pray for me, or think of me – whatever works for you. I'm about to leave for church and I've got a miserable ice pick headache all on the right side. I know what it's from …. the week has been HIGH STRESS, so it's not surprising.
Thanks, abby

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Sorry to hear of your headache, @amberpep. Will you check in and let me know how you are doing later today?

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Please pray for me, or think of me – whatever works for you. I'm about to leave for church and I've got a miserable ice pick headache all on the right side. I know what it's from …. the week has been HIGH STRESS, so it's not surprising.
Thanks, abby

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@amberpep

Please pray for me, or think of me – whatever works for you. I'm about to leave for church and I've got a miserable ice pick headache all on the right side. I know what it's from …. the week has been HIGH STRESS, so it's not surprising.
Thanks, abby

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@amberpep – so sorry that you have had this ice pick headache. I've moved your post here where your previous post was about these headaches. Hoping that @annpie88 @johnbishop and @kim_o will have some thoughts and encouragement for you.

Have you taken anything for the headache, or what are you thinking of for treating it?

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@amberpep

Please pray for me, or think of me – whatever works for you. I'm about to leave for church and I've got a miserable ice pick headache all on the right side. I know what it's from …. the week has been HIGH STRESS, so it's not surprising.
Thanks, abby

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Hi @amberprep, sorry you are having one of those ice pick headaches. You have probably already left for church so maybe you can file this link from the American Institute of Stress away for the next time.

Take a Deep Breath
https://www.stress.org/take-a-deep-breath

Liked by Lisa Lucier

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Many of you have talked about symptoms from your trigeminal neuralgia (TN). Wanted to touch base and see how things are going. I believe your responses will be helpful to others in this conversation, as well.

@kim_o – how has your pain been lately? You mentioned you noted that salt, stress and caffeine were your biggest triggers. Have you found it challenging to moderate these?

@amberpep – are you having any more ice pick headaches? You mentioned stress in your last post about these. Do you also find stress to be a trigger?

@annpie88 – how is your mother's TN? Have you decided what the next steps for her will be?

@jmjlove – how is your type 2 TN? Are you experiencing any more tooth pains?

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Stress is my main trigger. I also get pain in my right eye after reading for a long time. The pain radiates to the right side of my face. I had gamma knife and about 75% of facial pain is gone. I can get a shot for the area that is painful but there is a 20% risk of losing use of right side of face. I choose to continue meds and deal with pain unless it gets worse.

Liked by Lisa Lucier

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@lisalucier

Many of you have talked about symptoms from your trigeminal neuralgia (TN). Wanted to touch base and see how things are going. I believe your responses will be helpful to others in this conversation, as well.

@kim_o – how has your pain been lately? You mentioned you noted that salt, stress and caffeine were your biggest triggers. Have you found it challenging to moderate these?

@amberpep – are you having any more ice pick headaches? You mentioned stress in your last post about these. Do you also find stress to be a trigger?

@annpie88 – how is your mother's TN? Have you decided what the next steps for her will be?

@jmjlove – how is your type 2 TN? Are you experiencing any more tooth pains?

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@lisalucier

Yes, still tooth pain, also left side face pain, eye, scalp, and neck pain. It's pretty constant, but I still am grateful the electric zaps haven't occurred in a long time. The ache is not touched by otc pain relievers, but does respond to opioid pain relievers, which do not work well for the zaps. It's very hard to deal with cool breezes, so scarves are a must. All in all I am not the worst case and for that, again, I am most grateful. Thank you for asking, Lisa. God bless!

Liked by Lisa Lucier

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@vickylynn

Stress is my main trigger. I also get pain in my right eye after reading for a long time. The pain radiates to the right side of my face. I had gamma knife and about 75% of facial pain is gone. I can get a shot for the area that is painful but there is a 20% risk of losing use of right side of face. I choose to continue meds and deal with pain unless it gets worse.

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Hi, @vickylynn – would you suggest gamma knife to others with trigeminal neuralgia, then? What was the experience like of receiving this treatment?

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