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metallica81788
LSU Fan
Charleston SC
Member since Sep 2008
3097 posts

re: Trigeminal neuralgia - dealing with severe nerve pain
If first line medications like carbamazepine aren't doing the trick, go see a radiation oncologist that does Gamma Knife. Highly targeted dose of radiation designed to ablate the problem nerve root. Very safe in well-trained hands. It's not invasive like a surgery (microvascular decompression oftentimes is only successful when there is an aberrant artery pulsating on the nerve root) and has pretty good success rates. Radiation oncologists can treat this with radiosurgery without a Gamma Knife (using a regular linear accelerator or CyberKnife machine) but it's not as good. Find someone who does this often.


emboslice
Member since Dec 2012
4140 posts

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

metallica81788

Thank you


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JGood
LSU Fan
Baton Rouge
Member since May 2016
691 posts

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

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


I've exceeded that limit a few times.

He's great now. Surgery was a complete success, and he doesn't a single lingering symptom at all. Only thing serving as a reminder is a pretty wicked scar above his ear, but he couldn't care less about it.


emboslice
Member since Dec 2012
4140 posts

re: Trigeminal neuralgia - dealing with severe nerve pain
Bump for new eyes. Our appointment is on Tuesday in Portland.


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DavidStHubbins
New Orleans Saints Fan
Member since Oct 2012
20 posts

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

my SO who had her SCM cut when she had brain surgery


quote:

numbness/loss of vision and hearing/drooling and nasal dripping on that side


Just a few questions and thoughts. This history of brain tumor and post-surgical development of trigeminal neuralgia is interesting. Where specifically was the tumor located and what type of tumor was it?

I wouldn't imagine the removal of her SCM to cause directly the trigeminal neuralgia but rather that she has had neurosurgery of some unspecified sort. Without really knowing the details of the neurosurgery, I'm curious about the nasal dripping. Does this occur in conjunction with the pain, or is this a more constant issue? Is it only on one side?

Again, without really knowing what they did when they operated previously, it's really hard to say if this is something even medically manageable (including Kratom as medicine) to begin with. Considering her history of neurosurgery, physical irritation of her trigeminal nerve due to post-surgical changes is something that needs to be considered and may only be fixed with more surgical or radiotherapy options.

Point being, it is important to discuss with the neurologist the associations that occur with the pain and those that occur regardless of pain. As you mention, an MRI can help with some answers particularly when compared to her previous. The neurologist may recommend carbamazepine until the MRI can be done or answer found. It's a pretty widely prescribed drug for a variety of diagnoses, and its the drug with the most evidence of helping those with classical TN. That being said, there are a ton of medications used to treat TN. Another issue to be discussed is if she accepts traditional medicine and it doesn't work, how far do you go before the surgical/radiotherapy option is put on the table. As difficult as it may be, she needs to think about what that threshold is.

Good luck with both the appointment and thereafter treatment of your SO's TN.


emboslice
Member since Dec 2012
4140 posts

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

Just a few questions and thoughts. This history of brain tumor and post-surgical development of trigeminal neuralgia is interesting. Where specifically was the tumor located and what type of tumor was it?


The tumor was on the left side behind her ear, wrapped around her brain stem. Forgive me if that seems a little off, the scar is behind her left ear, that’s why I say that. But it was wrapped around the stem / on the left side. I can’t remember the exact tumor/cyst name. It wasn’t cancer. Epidermoid cyst perhaps? Basically something didn’t form while her mom was still carrying her.... it creates a misfiring of cells with nowhere to go so it creates the mass. The tumor will regrow (the CBD/THC intake will help slow down this process) ... it took 29 years to affect her. Most people who get this type of tumor get it in the back of their leg or the ankle. Hers just happened to be in the head

FWIW the SCM was cut, not removed. Post-op she wasnt given any physical therapy whatsoever so I’m often left wondering if that had healed up better and it’s strength was re-evaluated if she would be fighting fewer symptoms now.
quote:

Curious about the nasal dripping

So the nasal dripping started when she got original symptoms. It was when she was having an “episode” and only dropped on the left side. Her mom flipped out when she heard, because she thought it may be spinal fluid dripping. Was this your thought? As far as now, the dripping from her left side happened for the first 4 weeks of this latest bout. It doesn’t seem to be dripping now but sometimes when the pain is really intense she will drip. Or drool.

quote:

Traditional medicine
of course this is her first resort but after the info in this thread, an obviously her ongoing pain, she will have to do something more than traditional meds and Kratom. She doesn’t depend on Kratom for the relief but sometimes it helps her go to sleep.

IMO, she will have to do some type of surgery. As much as she doesn’t want to (and with the lowest healthcare it’ll be a bitch), in order to have a decent life without pain she’s going to have to give in to either the everyday medicine or the one time surgery. I would do the surgery myself. Then again, I am not in her shoes and I’ve never had surgery.

When a doctor goes into your brain, when it’s over you are different. I think that’s her biggest fear, since it was her reality ~3 years ago

You’re the second person to mention that medicine so it’s on my list of things to discuss with the doctor.

We are currently unable to go to the appointment because of snow having most of I-5 northbound closed
We have about 22 hrs to get there with a 6 hr drive. Hoping to make it.

I wanted to quote you better but my quote function was messing up during the response.


Btw, although TN seems like it’s the culprit we really don’t know. She says that she thinks something is physically moving, as if her plates were shifting. If you are in the position to know, she also gets a small “ball” that will come up behind her ear whenever she is in excruciating pain. You can physically feel it pop out. No clue what it is.

Part of me is wondering if the screws in her head are pressing on something


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emboslice
Member since Dec 2012
4140 posts

re: Trigeminal neuralgia - dealing with severe nerve pain
After a 14 hr drive through ice and snow we made it to Portland in what typically takes 4.5 hrs.

Met with the doctor who was great. We didn’t get much accomplished but scheduled an MRI of her brain and neck for the beginning of April.

The doctor was more concerned with the regrowth more than the TN. He says he has patients who come back in like clockwork every 4 years... they open them up, clean them out and send them on their way. This is seeming more likely to happen for us but we won’t know anything until after the appointment.

What really has me believing the tumor is back is that 3 nights ago, (I was asleep) my SO walked outside for some fresh air and she was in such intense pain she had to lay on the ground for 15 minutes. This is the type of thing that was happening 3 yrs ago when the symptoms started. She says it feels like gravity is just forcing her to the ground, always on the left side. Kind of like vertigo or something...

He prescribed her Gabopentin (sp?) which we filled but have no taken yet. Does anyone have experience with the medicine they’d like to share? As of now, she more than likely will not take it due to the side effects of depression and the state of mind she is already in. Should I mention the other med mentioned in here to the doc? I did and he said Gab is what he wanted to try first without really saying much about the other one.

Thanks to those who will / have given suggestions


Roger Klarvin
Texas A&M Fan
Central Texas
Member since Nov 2012
40612 posts
 Online 

re: Trigeminal neuralgia - dealing with severe nerve pain
It's generally considered to be one of the most painful things humans are capable of experiencing. High rates of suicide among trigeminal neuralgia patients.

I find it odd that she is unwilling to take heavily researched and tightly regulated pharmaceuticals but will take a completely unregulated drug known for its unpredictable side effects.


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Roger Klarvin
Texas A&M Fan
Central Texas
Member since Nov 2012
40612 posts
 Online 

re: Trigeminal neuralgia - dealing with severe nerve pain
The debate between carbamazepine (Tegretol) and gabapentin (Neurontin) is still ongoing and there isn't substantial evidence at this time that one is better than other in regards to trigeminal neuralgia.

If she agrees to take one of those medications and it doesn't provide relief, she could be tried on the other but in reality many patients will ultimately need gamma knife radiosurgery to address the culprit branch of her trigeminal nerve. It's not an invasive surgery and very safe when performed by an experienced radiation oncologist or neurosurgeon.

The scary fact is with this disease there's generally two kinds of patients long term: Those who undergo successful treatment and those who attempt to harm themselves until they either join the successful treatment group or successfully commit suicide. Some estimates suggest that up to 50% of sufferers who do not achieve a reasonable degree of symptom relief will attempt suicide within three years of diagnosis.

She needs to get professional, mainstream medical help and abide by their recommendations.
This post was edited on 3/9 at 5:49 pm


emboslice
Member since Dec 2012
4140 posts

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

She needs to get professional, mainstream medical help and abide by their recommendations.
we are, but for people who have medical history of depression, I understand why she has reservations.

It seems you are still stuck on the Kratom thing. She took it for about 3 weeks and hasn’t in some time. She is not depending solely on that. Acupuncture has helped a ton and so has massage/chiro

We THINK it’s TN but there is also a chance the tumor is back. we won’t know until after April 11

Good to know that carbamazepine (Tegretol) and gabapentin (Neurontin) are relatively similar. Perhaps the side effects of carbamazepine aren’t the same. She won’t know unless she tries.

Interesting that some that have taken it told her that when taking the gabopentin there’s a fine line between having relief and throwing up. I know this is hard to believe, but it’s the same problem she has with Kratom. Throwing up is extremely painful for her already throbbing neck and face hurting. Just saying she has her reasons for reservations.
This post was edited on 3/9 at 7:06 pm


Scooby
LSU Fan
Member since Aug 2006
1649 posts

re: Trigeminal neuralgia - dealing with severe nerve pain
Can probably start with something like gabapentin or amytriptyline which have been shown to help nerve type pain. She can just see her PCP for this is she's willing to try meds.
This post was edited on 3/9 at 8:40 pm


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Huck Finn
LSU Fan
Baton Rouge
Member since Jul 2009
1877 posts

re: Trigeminal neuralgia - dealing with severe nerve pain
Here's our experience - if it's too long, don't read:

My wife was having severe nerve pain in her scalp (like fire) for 3 years, and was diagnosed with Occipital Neuralgia. They put her on Gabapentin & Lyrica (so I can't really say if any side effects were due to one or the other).

They take a few days to build up in your system, and can make the pain more bearable, but they desensitize everything to a degree, and if you miss a day (which is likely because they're controlled and they won't refill your prescription until you've run out) it will leave you in pain a couple of days until it builds back up.

We wanted to try for another baby, but those medications were bad for that, and my wife was sick of being beholden to that crap every day, so she tried to start ramping down on it. That didn't go great either.

Eventually one morning she couldn't sleep at 2AM due to the pain, and she was searching online for relief. She came across some people that claimed to be cured by this oddball treatment. The guy calls it "Central Nervous System Restoration" and it's a mix of chiropractic work and skeletal plate adjustments in your head. He does some testing to see which plates in the skull are "locked" then he treats them, allowing it to heal itself.

It sounds like voodoo. I even laughed when my wife explained the treatments and testing. It wasn't covered by insurance, either. But after like the first 4 day session, my wife was back. Like 90% fixed. It was unreal. It was a legit miracle of God. She had quit her medications cold turkey the first day of treatment and by day 4 she was giddy and telling me how food tasted better and I seemed funny again.
We finished the rest of her treatments and she's been pain free for two years. Eliminated some allergies she had as well. Crazy stuff. God is good.

I'm telling you this because 1) Maybe that treatment will work for your SO, 2)Miracles shouldn't happen in a corner, 3) There is hope out there that this won't last forever.

If you want the doctor's name (I think he's still in the Dallas area) I can give it, but didn't want to sound like I'm pushing him. It seems nutty, but it absolutely worked for my wife.
Hang in there and keep searching!


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