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emboslice
Member since Dec 2012
4120 posts

Trigeminal neuralgia - dealing with severe nerve pain
Hello all - I rarely post on this board but enjoy the lurk. I’ve previously posted about post-op recovery for my SO who had her SCM cut when she had brain surgery. In short, she often gets “stuck” or can’t turn a certain way.

More recently, she has had very severe pain across her face / ear / left side (side where tumor was located) that sent her to the ER. Similar to razor blades or fire she says. Pain also comes with numbness/loss of vision and hearing/drooling and nasal dripping on that side. Scary shite right? Feels like we have been dealing with it forever so that is why we are not currently in the hospital freaking out.

Just curious if anyone has dealt with this before or have any suggestions for pain relief.

As of right now, taking forms of CBD, THC, Kratom, chiropractor and massage once a week, acupuncture starting again soon. The research we have done suggests medication, surgery - neither of which she will do, or meditation yoga and accupuncture. So there’s not much

Curious if anyone has any feedback. As of right now, she can’t work or really do anything due to the pain. Going on 6 weeks. Surgery will be 3 years ago in August


Jim Rockford
LSU Fan
Member since May 2011
67310 posts
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re: Trigeminal neuralgia - dealing with severe nerve pain
Best of luck. That sounds nightmarish.


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LSUTIGER16
Georgia Fan
Biloxi
Member since Oct 2005
204 posts

re: Trigeminal neuralgia - dealing with severe nerve pain
Where do you guys live?


emboslice
Member since Dec 2012
4120 posts

re: Trigeminal neuralgia - dealing with severe nerve pain
Oregon. Original surgeon is in California, L.A. area and will not accept Oregon health insurance (OHP aka Obamacare is what she is on).

The real BS? When we contacted the surgeon, he runs an entire program of the hospital that deals with trigemjnal neurologia and face pain.

the healthcare realm is truly sad. You tell them “it’s an emergency” and they say they’ll call you in 7-10 days.


dbuchanon
Florida Fan
Member since Nov 2014
10993 posts

re: Trigeminal neuralgia - dealing with severe nerve pain
quote:

You tell them “it’s an emergency” and they say they’ll call you in 7-10 days.


Damn! Sorry youre going through that.


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LSUTIGER16
Georgia Fan
Biloxi
Member since Oct 2005
204 posts

re: Trigeminal neuralgia - dealing with severe nerve pain
Are you guys seeing a pain management physician? If so, what options is he giving you? I know you mentioned she does not want to take meds or have surgery, but there are some interventional procedures that can be done. I work with pain management physicians and I will get some ideas for you. My immediate thought is to stimulate the nerve with a peripheral nerve stimulator.

I’ll post tomorrow...


emboslice
Member since Dec 2012
4120 posts

re: Trigeminal neuralgia - dealing with severe nerve pain
quote:

Are you guys seeing a pain management physician? If so, what options is he giving you? I know you mentioned she does not want to take meds or have surgery, but there are some interventional procedures that can be done. I work with pain management physicians and I will get some ideas for you. My immediate thought is to stimulate the nerve with a peripheral nerve stimulator.

I’ll post tomorrow...


As of right now we are not seeing one. We are trying to get connected with a neurologist who will approve an MRI. She hasn’t had one in two years and they say its not a priority / insurance will not cover it.

Forgive me for not knowing the name (I could probably find it in my search engine), but she did receive from type of laser treatment to help with the nerve damage. — edit: it was a SCENAR machine

Daily medication/pharma would never be a thing for her. Hoping for something all natural, although I know when it comes down to functioning in society without constant pain, it may come down to that.

We have been experimenting with Kratom, as suggested to us by some people with lifelong pain.

Looking forward to your next post.
This post was edited on 2/11 at 12:58 am


JGood
LSU Fan
Baton Rouge
Member since May 2016
673 posts

re: Trigeminal neuralgia - dealing with severe nerve pain
Awful diagnosis. My dad had it and he's tougher than nails and it would take him out of commission from the pain. He described it as 'red hot icepick being jammed into his face and running an electrical current through it.' They call it the "Suicide Disease" for a reason. He had brain surgery for it 2 years ago and said it was the best thing he's ever done. He said after that had the surgery not worked, he didn't think he could deal with that pain without living up to the unofficial namesake. My nanny also has it, but it's nowhere as severe as his and does the CBD/THC route and somewhat manages the pain, but not symptoms. Good luck to your ole lady.


emboslice
Member since Dec 2012
4120 posts

re: Trigeminal neuralgia - dealing with severe nerve pain
quote:

Awful diagnosis. My dad had it and he's tougher than nails and it would take him out of commission from the pain. He described it as 'red hot icepick being jammed into his face and running an electrical current through it.' They call it the "Suicide Disease" for a reason. He had brain surgery for it 2 years ago and said it was the best thing he's ever done. He said after that had the surgery not worked, he didn't think he could deal with that pain without living up to the unofficial namesake. My nanny also has it, but it's nowhere as severe as his and does the CBD/THC route and somewhat manages the pain, but not symptoms. Good luck to your ole lady.

Thank for the good wishes. I didn’t realize that the disease had that nickname but it made me extremely heavy hearing that, and I truly can understand why it’s called that as well. Did you dad have the surgery pre-diagnoses or post? Was the surgery specifically to fix the nerve damage? Someone would have to be truly convincing to her for her to go through the surgery again. If you know the name of the surgery he had, I’d love to research it more.

I feel helpless, and I’m not even the one in pain.


emboslice
Member since Dec 2012
4120 posts

re: Trigeminal neuralgia - dealing with severe nerve pain
quote:

'red hot icepick being jammed into his face and running an electrical current through it

This is extremely accurate to what she describes. I just can’t imagine. And we just don’t know how to fix it or calm it down


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JGood
LSU Fan
Baton Rouge
Member since May 2016
673 posts

re: Trigeminal neuralgia - dealing with severe nerve pain
His was due to pressure being put on the nerve by the cluster of blood vessels pressing against the nerve which was triggering the pain. The surgery was called 'Microvascular Decompression' He went to Ohio and had the surgery done. He's an old school ER doc and treatment/surgery is always 2nd option to either give it time or suck it up, but with trigeminal, he recommends surgery to everyone that has pain like your SO and what his was. There's no other way to deal with it other than the symptons and often it only gets worse.

Edit: He got diagnosed and after 8 months of dealing with it, had the surgery.
This post was edited on 2/11 at 12:22 pm


hogbody
Arkansas Fan
Fayetteville
Member since Oct 2008
4454 posts

re: Trigeminal neuralgia - dealing with severe nerve pain
So she’s willing to use Kratom but not actually use pharmaceuticals regulated by the FDA?

Ok.


Sam Waterston
LSU Fan
Baton Rouge
Member since Sep 2008
1935 posts

re: Trigeminal neuralgia - dealing with severe nerve pain
She’s unfortunately limiting herself by not being willing to take any meds. Carbamazepine is a good Med for this, as is seeing a pain management physician who may be able to offer alternatives for pain control. It’s a terribly painful issue that’s difficult to control without these limitations. Best of luck


emboslice
Member since Dec 2012
4120 posts

re: Trigeminal neuralgia - dealing with severe nerve pain
She got an appointment for the 26th in Portland with a neurologist. Supposedly it’s just a consultation so I’m sure there will be more than one. We are a little disappointed it’s another 2 weeks away, but it’s progress.

quote:

She’s unfortunately limiting herself by not being willing to take any meds. Carbamazepine is a good Med for this, as is seeing a pain management physician who may be able to offer alternatives for pain control.

I guess I should clarify and say we would prefer it to be the last resort. If it comes down to living with pain every single day in a debilitating way or biting the bullet and taking meds everyday, she just may do it. The pain is extreme. Trying hard to find the most natural pain relief possible... and I guess there’s no curing this thing without surgery.


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emboslice
Member since Dec 2012
4120 posts

re: Trigeminal neuralgia - dealing with severe nerve pain
quote:

So she’s willing to use Kratom but not actually use pharmaceuticals regulated by the FDA?

We were a little unsure at first, too. It was recommended to us by someone we respect a lot and who has been dealing with nerve pain for 25 years. She said Kratom is the only thing that has helped her not have to take Advil and Tylenol everyday.

She tried it, and while she hasn’t mastered what dose will be appropriate for her, it’s given her some relief and allowed her to get some sleep.

Don’t knock it til ya try it.... that being said, I have no tried it myself.

quote:

What is Kratom? Kratom (Mitragyna speciosa) is a tropical evergreen tree from Southeast Asia and is native to Thailand, Malaysia, Indonesia and Papua New Guinea. Kratom, the original name used in Thailand, is a member of the Rubiaceae family. Other members of the Rubiaceae family include coffee and gardenia. The leaves of kratom are consumed either by chewing, or by drying and smoking, putting into capsules, tablets or extract, or by boiling into a tea. The effects are unique in that stimulation occurs at low doses and opioid-like depressant and euphoric effects occur at higher doses. Common uses include treatment of pain, to help prevent withdrawal from opiates (such as prescription narcotics or heroin), and for mild stimulation.

In the US, this herbal product has been used as an alternative agent for muscle pain relief, diarrhea, and as a treatment for opiate addiction and withdrawal




You’re right the FDA has not approved it. That’s fine with me, tbh. It has given her a few extra nights of sleep

She didn’t take pharmas long after her brain surgery either... I think 2 days she took them. She has a very high tolerance for pain and has grown up not depending on meds. Just a preference.

For anyone who is looking into trying it, the advice I got was that not every Kratom is the same for everyone. You have to find a type that works for you. If you take too much, you can get nauseous and puke ... but if you take the right amount it is a relaxing sedation. First time my lady took it, 40 min later she was passing out sitting up - VERY odd for her.

She takes Red at night and Gold during the day (a white and green combo).
Red = sleep / relaxing
White = energy / morning
Green = helps with opioid withdrawals so i assume its pain relieving as well.

There is a nice, respectable herb shop in our city where we get it.


emboslice
Member since Dec 2012
4120 posts

re: Trigeminal neuralgia - dealing with severe nerve pain
Thanks for that info.

I’m not sure if hers is from pressure or just a reaction of her SCM being cut.

quote:

He's an old school ER doc and treatment/surgery is always 2nd option to either give it time or suck it up, but with trigeminal, he recommends surgery to everyone that has pain like your SO and what his was. There's no other way to deal with it other than the symptons and often it only gets worse.

I also appreciate this insight. It may very well come down to surgery

There’s only so much CBD/THC your body can process. Trust me

Appointment with acupuncturist this week.

eta: how’s he doing now?
This post was edited on 2/11 at 3:00 pm


hogbody
Arkansas Fan
Fayetteville
Member since Oct 2008
4454 posts

re: Trigeminal neuralgia - dealing with severe nerve pain
Can understand not wanting to use some pharma, especially opioids, but like a previous poster said carbamazepine could be a game changer for her. Worth researching at least.


emboslice
Member since Dec 2012
4120 posts

re: Trigeminal neuralgia - dealing with severe nerve pain
quote:

Can understand not wanting to use some pharma, especially opioids, but like a previous poster said carbamazepine could be a game changer for her. Worth researching at least.

Already researching it
More than happy to hear any and all options.


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LSUTIGER16
Georgia Fan
Biloxi
Member since Oct 2005
204 posts

re: Trigeminal neuralgia - dealing with severe nerve pain
So the pain physicians I spoke with today all agree that radiosurgery with a gamma knife is the best option because of the pain.

Another doc said gabapentin worked well on one of his patients, but that patient only really experienced numbness (ants crawling) and not pain.


emboslice
Member since Dec 2012
4120 posts

re: Trigeminal neuralgia - dealing with severe nerve pain
quote:

So the pain physicians I spoke with today all agree that radiosurgery with a gamma knife is the best option because of the pain.

Another doc said gabapentin worked well on one of his patients, but that patient only really experienced numbness (ants crawling) and not pain.

Thanks for getting back to me. I will be researching both of these things

She also experiences the numbness... triggers the drooling, but her numbness goes down into her arm and elbow as well.

I will try to keep you all updated with whatever we decide to do, in case the information is useful to someone you know.


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