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

@jennheadlee

Hi everyone,
My name is Jenn and I pretty sure that I am about to be diagnosed with Peripheral Trigeminal Neuropathy. My understanding of it comes from the front seat after watching my mom suffer with it for years. She went undiagnosed for years until a doctor at the Mayo clinic diagnosed her. She tried multiple forms of treatment and nothing ever worked. She passed away at the 57 due to other medical complications, but she lived in pains for years before she passed. I have slowly been showing the signs for 6 years and after numerous dentist appointments to rule out an issue with root canals, and going to Endodontist to rule out the bad root canals, there is nothing left. All my symptoms match my mom's symptoms and it was just suggested that I call a Neurologist to start looking into the issues I ma having. Since I just walked this trail with my mom, I am familiar with many of the steps. However; I would love ot hear how others deal with the facial pain caused by this disorder.
Thanks in advance for reading my message and have a wonderful evening!
Namaste!
Jenn

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Hi Jenn I didn't know what I was having, except discomfort when I was eating. So I went to the dentist and she suggested that I was having pain in that area, my upper tooth on the left side, because stuff was getting in from the back of the tooth and dropping into my tooth and that was the pain I was feeling. That tooth had to be removed, according to her. Well I got up and said that was the most idiotic explanation I ever heard and left, never to return to that office again. Later as the pain became more intense I seek a neurologist in my health group and he explained to me without touching me, that I had Trigeminal Neuralgia. He then proceeded to tell me how it would all play out, he was right on and prescribed my first medication. I did my research then about my way of dealing with the pain and lived my life until I had none. I got the surgery, after I found the doctor I felt was my best choice and I am 1000 % better. I keep stressing this point that you are your best advocate for what you have or need and pursue that first, if you feel adamant as I felt, do your homework and get all the information that YOU need and then decide with all that info, what is the best course for you. I hope that helps you in your journey to a solution of what you are going through.

Liked by kim_o

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@carmelo1morrone

Hi Jenn I didn't know what I was having, except discomfort when I was eating. So I went to the dentist and she suggested that I was having pain in that area, my upper tooth on the left side, because stuff was getting in from the back of the tooth and dropping into my tooth and that was the pain I was feeling. That tooth had to be removed, according to her. Well I got up and said that was the most idiotic explanation I ever heard and left, never to return to that office again. Later as the pain became more intense I seek a neurologist in my health group and he explained to me without touching me, that I had Trigeminal Neuralgia. He then proceeded to tell me how it would all play out, he was right on and prescribed my first medication. I did my research then about my way of dealing with the pain and lived my life until I had none. I got the surgery, after I found the doctor I felt was my best choice and I am 1000 % better. I keep stressing this point that you are your best advocate for what you have or need and pursue that first, if you feel adamant as I felt, do your homework and get all the information that YOU need and then decide with all that info, what is the best course for you. I hope that helps you in your journey to a solution of what you are going through.

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@carmelo1marrone…teeth pain was my first indication of trigeminal N. After having teeth and a bridge removed, I was diagnosed. Food entrapment on left side, off center causes terrible pain. Always . At least now I know and don't beg to have tooth pulled, lol. The pain has spread to all the branches, but have pain without the zaps. So I guess that's type 2 TN.

Pain in my head is always. But sometimes have a hard time distinguishing if it's truly trigeminal or if it's from stroke I had 3 years ago.

Liked by lauren123

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@carol94

Pain makes people very tired. So does the anxiety of a medical issue that isn’t completely diagnosed or you don’t feel the security of good medical care being available….. Still looking for that website for you. I have to rest midday everyday even though I am now on
medications that help me a great deal. I’m currently reading, “Chronic Pain: A Way Out by Stephen Colameco, MD. Our local hospital also offered a completely free class about Chronic Pain/Illness. We met once a week for 14 weeks. There were presentations from specialists…….amongst the group we had a lot of sharing about our experiences and doctors.

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@carol94, Would you please let us know what medications are helping you? I have used several but they don't seem to be working anymore. Thanks so much

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@lauren123

@carol94, Would you please let us know what medications are helping you? I have used several but they don't seem to be working anymore. Thanks so much

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I started with oxcarbazepine only when I felt the discomfort half in morning and half at night. That worked for a few years, because the discomfort wasn't on a regular basis. After I had my first attack (electric shock,) that lasted for 15 minutes on and off pain in the time, which you knew the next bout of pain was coming and you couldn't do anything about, but hope it wouldn't last as long as the last one. As the years went by the attacked were coming and I used the meds to stop pain before it came. It got to a point that the med didn't work and added another called gabapentin which pick-up the slack that oxcarbazepine wasn't doing on its own. When that happen I seek out a surgeon and had the mvd done. I spoke to many people I know who had or still have TN, everybody is different and your going to have your doctor and you figure out whats going to work for you. I know I was not going to be living or existing on drugs to get thru the day. if I had another option, which I took.. I am grateful every day to live a full day without meds and pain. Be well Carmelo.

Liked by kim_o

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Hi everyone. I just joined and was recently diagnosed with SFN earlier this week, after struggling with many difficult symptoms for over 18 months. The main question two questions I have are 1) does anyone suffer from SFN affecting their cranial nerves? I’ve had burning in my right ear, right side of my tongue and throat since this all started fall of 2017. 2) does SFN cause muscle twitching for anyone?

I was originally told this was affecting my trigemnial nwrve, but it’s more body wide now. However, the most pain I feel is constant burning pain in my ear mouth and throat.

I have follow up tests next week as my neurologist continue to try to pinpoint the cause of the SFN. They have been skeptical of my symptoms up to now, since they couldn’t find a cause until the recent punch biopsy. I’m on lyrica but it doesn’t offer enough help, especially for the burning pain in my face and mouth. Any treatment suggestions would be incredible. Thank for your time!

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Hi @richj8,
I'm glad to see that you joined this discussion. I forgot to mention that Mayo Clinic’s info on trigeminal neuralgia treatments list a variety of anticonvulsants, antispasmodic agents or botox injections http://mayocl.in/1Mz18C8. There is also an older discussion that you may wish to read where Connect members @cagon @jwhite64 @calebba @jenkob @zane @omlee @nomore are talking about their experiences with treatment http://mayocl.in/28SOKk5

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@richj8

Hi everyone. I just joined and was recently diagnosed with SFN earlier this week, after struggling with many difficult symptoms for over 18 months. The main question two questions I have are 1) does anyone suffer from SFN affecting their cranial nerves? I’ve had burning in my right ear, right side of my tongue and throat since this all started fall of 2017. 2) does SFN cause muscle twitching for anyone?

I was originally told this was affecting my trigemnial nwrve, but it’s more body wide now. However, the most pain I feel is constant burning pain in my ear mouth and throat.

I have follow up tests next week as my neurologist continue to try to pinpoint the cause of the SFN. They have been skeptical of my symptoms up to now, since they couldn’t find a cause until the recent punch biopsy. I’m on lyrica but it doesn’t offer enough help, especially for the burning pain in my face and mouth. Any treatment suggestions would be incredible. Thank for your time!

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What is SFN?

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In reply to @mamajomclane "What is SFN?" + (show)
@mamajomclane

What is SFN?

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@mamajomclane, SFN is small fiber neuropathy

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Botox injections have been very helpful. It takes 7-10 days to kick in. And because doctors are only allowed to inject them every 3 months, 2 weeks prior to the next injections the shooting pains will start up again. 10mcg Butrans patch worn 24/7 with a pain medication helps right away. Best of luck.

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@richj8

Hi everyone. I just joined and was recently diagnosed with SFN earlier this week, after struggling with many difficult symptoms for over 18 months. The main question two questions I have are 1) does anyone suffer from SFN affecting their cranial nerves? I’ve had burning in my right ear, right side of my tongue and throat since this all started fall of 2017. 2) does SFN cause muscle twitching for anyone?

I was originally told this was affecting my trigemnial nwrve, but it’s more body wide now. However, the most pain I feel is constant burning pain in my ear mouth and throat.

I have follow up tests next week as my neurologist continue to try to pinpoint the cause of the SFN. They have been skeptical of my symptoms up to now, since they couldn’t find a cause until the recent punch biopsy. I’m on lyrica but it doesn’t offer enough help, especially for the burning pain in my face and mouth. Any treatment suggestions would be incredible. Thank for your time!

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It took 8 years for me to finally be diagnosed with SFN. 8 years of horrific nighttime neuropathy. The 10mcg Butrans patch worn 24/7 with Percocet stopped the nighttime neuralgia instantly. The pain I have in my left ear is still a daily problem. I believe it is caused by Trigeminal neuralgia not SFN. When the Trigeminal nerve shoots it shoots thru the ear into my mouth and down my throat. Botox injections are a must for TN.

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@krissye

It took 8 years for me to finally be diagnosed with SFN. 8 years of horrific nighttime neuropathy. The 10mcg Butrans patch worn 24/7 with Percocet stopped the nighttime neuralgia instantly. The pain I have in my left ear is still a daily problem. I believe it is caused by Trigeminal neuralgia not SFN. When the Trigeminal nerve shoots it shoots thru the ear into my mouth and down my throat. Botox injections are a must for TN.

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Thanks Krissy. That’s exactly what I feel In my right ear. The pain burns in my right ear, right side of tongue, and right side of throat. It makes speaking difficult when the pain is at its peak. But, the pain is also in other areas, including left leg, right arm. And there’s random muscle twitching, including constantly at rest in both calves.

I truly can’t understand it, and my docs can’t figure out the cause. Finally getting a small fiber neuropathy diagnosis is helpful, but it’s seems only a piece of the puzzle. And no one can tell me why this has been going on for 1 1/2 years. And there’s definitely a progression in how badly i feel.

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Hi Rich,
Have you ever Googled that question/topic under holistic medicine? Especially Functional Medicine. They are the most knowledgeable for troubleshooting and finding the cause of most illnesses. In the last year functional medicine has advance dramatically. It’s not anything like the holistic medicine of the last 20 years…
I have found solutions to life long health problems that no doctor could help me with (more in the last year than in the last 20 years).

I have to say that the CBD/CBDA oil I take has been a godsend also for my health and seasons of pain. There are few side effects (like lower blood pressure and some get dry mouth). CBDA is more effective than CBD or THC for pain (particularly nerve pain) and the NCIH website says this:
“Currently there is growing amount of evidence to suggest that the psychoactive ingredient in cannabis (THC) and individual cannabinoids may be effective in alleviating neuropathic pain and hyperalgesia. Evidence suggests that cannabinoids may prove useful in pain modulation by inhibiting neuronal transmission in pain pathways.”
It may not be a cure all but it helps me with so many issues.
Praying you will find answers and relief.
—kim

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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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@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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Hello, @amberpep – I'm sorry to hear you are enduring so much pain, not only physically, but from your family members not understanding what you are going through. As you mentioned trigeminal neuralgia, I moved your post here to connect you to others talking about this condition so they can empathize and offer support. Please click VIEW & REPLY in your email notification to find your post and to read previous posts in this conversation, "Trigeminal Neuralgia*."

I'd like to invite some of those involved in this discussion to return and offer some input on the "hellish" sharp pain on the side of your head, as if someone was stabbing you with a hot poker. @kim_o @krissye @lauren123 @johnbishop @richj8 also may have some input on your family blowing off this pain like it was nothing.

You mentioned taking lamotrigine (Lamictal), @amberpep. If I understand correctly, this is helping decrease the frequency of these stabbing pain incidents? When they do occur, are you taking the prescription ibuprofen (Motrin) at that point, or how are you managing these pain episodes?

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@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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Hi Abby @amberpep, I'm sorry to hear about your family not understanding how much pain you are in when you have one of the headaches. That adds even more stress on you which I'm guessing makes things a lot worse. Would it help to educate them a little?

Here's a good description of the headaches. Maybe you could print it and make a copy for each of them?

What to know about ice pick headaches
https://www.medicalnewstoday.com/articles/317234.php

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