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.
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I'm going to try to relate my ten year experience with TN, how I treated it, what I tried, and what appears to have finally worked. Certainly YMMV, however there might be nuggets for some of the pros to mine below:
TN: One side only, triggered by some physical stimulus only. Lasts 1-26 hours, mostly 6-24 hours, and 1 hour with "proper treatment". Occurs on average, 12-15 time per year, Cure: APPEARS to be hearing aid molds... Now, my attacks for about 2 years running, is only about once per year! Age = 75.
First, I tried a bit of everything and anything, NSAIDs, Gabapentin, opioids, heat, cold, positional treatments, pulling on ear (worked to some extent). I only found one thing that works 90% of the time, and 90% of the time it worked within one hour, and then it is totally gone, cured, eat normally, etc., for a month or more. Once gone, can hit my bad ear, and it won't reoccur. (OK, although it's true, I don't TEST hitting it like this!)
First, I kept very detailed logs of what I tried, and specifically, when I took each type, and when I had varying degrees of relief.
MY 10 year JOURNEY: I experimented extensively with hydrocodone / oxycodone. Although the doses of hydrocodone are slightly higher than oxycodone, I will only reference doses of hydrocodone. Very often, I'd first try a 5 Mg dose, wait about 4 hours, take more, and maybe, after 24 hours or so, it would finally go away. Then later, I tried 10 MG in ONE dose. (I weigh ~180 LBS so, YMMV). That seemed to work some of the time, but still only after maybe adding a smaller dose, or repeating the 10 MG, 4-6 hours later. From then on, I tried variations. I finally learned that 90% of the time, within ONE HOUR, if I took 12.5 MG, and no less than that, I would be completely pain free, and could eat, drink and feel great, (although dopey). Taking more might work, but why?? If 12.5 MG works, there's no purpose. But, every time I tried taking only 10 MG, it would never work in one dose.
CURE?? In the past few years, I've started sleeping with my hearing aids. I have acrylic custom molds. It seems like these attacks seldom occur now. My opinion is that my TN, is not directly caused by that nerve path into my skull, but by broken damaged ear cartilage.
MY CAUSE: As a result of cartilage that was damaged, it is sometimes [is] moved around and pinches a nerve. Almost never though, does it cause pain right away, and instead set up a syndrome. Generally, it only starts one to six hours after stimulated. I think it gets super irritated, then swells, and then the swelling further pinches the nerve, causing more swelling. Until that pinching pain SYNDROME is relieved, nothing else works, Since that nerve is very deep, heat or cold couldn't work. Even opening my mouth enough to take pills is enough to cause extreme pain for the next 15 minutes. Touching my other ear, also triggers the TN in the bad ear. Eating is out of the question. Holding absolutely still is the only way to limit the pain.
OPIOIDS: Yes. I know it doesn't exactly stop pain, and it only helps you "ignore it". But, it works for me and I have no explanation why. It is the only treatment that works for me. It is also the only time and purpose for me taking any opioid.
GETTING an OPIOID: I haven't had an "official diagnosis", so no one can prescribe treatment. To do this, I'd have to show up in the ER and try to convince them I had this totally invisible TN pain that they can't test for, or see. Next, I'd have to convince them that opioids is the only solution. Odds of successfully being treated effectively ?? Nearly zero, with a good chance, they'd take me to jail instead. In my state, it is illegal to even CARRY MY OWN prescribed opioids unless they were prescribed for THAT SPECIFIC episode, AND within the past few weeks. There's one exception to allow me to "carry": "A Chronic Pain Condition Exception". I'm guessing that if I started now, in a month or two, and $1,000-2,000 in fees, I might get ONE $2 prescription. Still, it is safer than any "street opioids" might be today.
APAP CAUTIONS: Another caution for anyone trying this: Acetaminophen is your enemy, and it can kill or disable you! While, unless you are addicted, or end up with fentanyl, your dose of prescribed opioids in the < 15 MG range, taken once and then given time to wear off, will likely not kill or hurt you. However, in the past at least, someone thought up the idea to prevent abuse would be to put so much APAP in each pill, that that the APAP will kill you, long before the opioid. I've seen 750 MG of APAP (I think), in a 5 MG of hydrocodone! There's a MAX per day dose of APAP that you should stay below: 3 MG, (3,000 MG). That would be a total of FOUR tablets, of 5 MG / 750 MG. That would mean for me, that if I even tried TWO doses of 12.5 MG, 6 hours apart, I'd already be over my daily SAFE limit, and then I start risking LIVER DAMAGE. (750 x 2.5 = 18.75 -- x 2, and that would be 3700 MG or 3.7 GM of APAP). For me luckily, I always worked out lower doses and stayed under that limit. Today's dose is typically 5 MG / 375 MG of APAP, so it is not quite as dangerous. For me at least, 10 MG of plain Oxycodone 5 MG, with no APAP works best, but you can't buy that anymore.
NO street drugs - Whatever you do though, don't even think about "borrowing" any pill that even could have been in the same bottle as a fentanyl laced poison pill, let alone be laced with it. Just the dust alone could do you in. If there's even a chance your friend might have obtained street drugs, don't even think about it. Every pill is not poison, but you only need one that is.
Today, you've got to ensure that anything came directly from a pharmacy, or risk death.
Lobby Congress -- Legalize and legitimize normally prescribed opioids -- Prevent any possibility for poisoning via fentanyl. Even sealing up the border won't work now, since there are years of inventory already here in the US. Yes, some opioids might be abused if you allowed opioids as we once did. But it would be much safer than losing +130,000 people every year to fentanyl POISONING, simply by outlawing, stigmatizing, and limiting legal opioids. Today, that path is the only practical option to obtain relief, unless you can prove you are dying of cancer.
I have had TN 1 twice affecting V1 & V2. I realized that the shocks were caused by something I did that caused excruciating pain from habits of a lifetime. Brushing teeth, chewing, touching my face, etc. If I was careful about not triggering the shocks I thought what would happen if I had no shocks for eight days. I accomplished this and the TN went away
This is by no means easy but is worth trying.
@wander3314
What was the repetitive movements that caused your TN?
I don't recall any repetitive movements. Both times came on in the winter.
@wander3314
Oh you said “habits of a lifetime” this made it sound like a repetitive movment with the head.
ANOTHER Idea, other than opioids ---
After my last LONG W.O.T., this one is short:
-- As I said above, opioids work for me. But, maybe this is why: ??
--- >> Let's say that I have primarily a syndrome that involves vascular stimulation. Once it starts swelling, the pain makes it worse, causing more swelling, etc.... Opioids break that cycle, whatever it is caused by. But, MAYBE what's happening is the reduced blood pressure, (which is already, even higher with all that pain), is what breaks the cycle. I haven't tried it, but a reasonably strong Beta Blocker like propranolol taken with caution, might also break the syndrome.
Personally, I don't care if it is an opioid instead, since I take it very infrequently, and usually a fairly low SINGLE dose, which lasts a month as a rule. However, it is hard to get, and therefore expensive to get. If a Beta Blocker worked, even if just an additional method, that would be great. The only thing opioids do for me, is make me euphoric!! But, NOT from the opioid effects which are somewhat pleasant for a while, but IT IS JUST the COMPLETE RELIEF OF PAIN they provide!! Before they kick in and get rid of the pain, for that hour, they just make me dopey and sleepy.
Physicians, please weigh in on this theory.
I've had sporadic TN for 20 years or so. It pops in about every 3 to 5 years and stays for about a month. Left side only... affecting mostly the area of my face from the left of my cheek just below my nose, to down below the middle of my lips... never protruding into the right side of my face. And when it arrives, I don't get the constant jolts throughout the day, as some of you do... they only happen if anything touches my face, like my hands / fingers, splashing water, brushing my teeth, the wind hits the area, facial / lip movements or expressions, eating, gum chewing, drinking fluids, etc. Know it sounds weird, but I feel blessed that I have such a mild case of this monster. Can only imagine what others that have the jolts all day long must go through... so sorry for your condition.
Through the years, I've learned that some of my triggers are: opening my mouth wide... like when eating a large apple; biting any food that requires a lot of force (harder foods); and washing face when I FIRST get up out of bed. But if I eat breakfast FIRST, washing my face doesn't affect it.
The personnel manager at a previous job I had 20+ years ago had the surgery, but it only lasted a month or two. Don't know what progress has been made in the interim years. Also sorry to report I haven't heard of any great breakthroughs in the press since.
Hoping and wishing everyone here soon finds their solution for TN, or a workaround, or an effective / safe treatment. All the best!
/LarryG