gobicycling

Tomorrow is Trigeminal Neuralgia Awareness Day.
I post this because I am affected by this rare and absolutely debilitating condition, which involves a "short circuit" of the trigeminal nerve near the brain, causing extreme pain, typically manifested by "electric shocks" in the face, as if someone had plugged in an electrical cord with the loose ends attached to one's face. It is called "The suicide disease", and on the TN listserv, I have witnessed folks who have taken their own lives because no one could solve their constant pain. On a formal pain scale,it is rated at the top - as a 10, higher than kidney stones and childbirth.
Likely, others on this forum have, or know of those who have, this condition. It interferes with most all daily activities - chewing, being outside - such as bicycling in the wind, etc.
Dentists often mistake it for teeth problems and uselessly pull teeth, which helps not a bit.
As for me, I have had one near brain operation and two radiofrequency nerve blocks. My pain is gone,but at the cost of no feeling whatsoever on the right side of my face. teeth, nose, eyess, etc. When at its worst for me, I had to eat through a straw.
Be aware that those you know may have some form of this condition. We hide it well, as do most pain sufferers. Thanks for reading. Tell your dentists about this condition. Some folks get relief from drugs, but many find they don't work or are unsatisfactory.
www.facepain.org

flangehead

I had a co-worker who had TN. Thanks for posting about this rarely discussed condition.

Polaris OBark

I had no idea.

I am glad to hear you have some relief, even though the cost seems very high.

Do you happen to know if it ever occurs transiently?

gobicycling

Yes, it can come and go. Some people get respite periods from this condition.

Steve B.

My wife was recently diagnosed with this. She thought it was a dental issue as it seemed to be a pain in an upper tooth, dentist didn't see anything, root canal dentist saw nothing, oral surgeon did very expensive 3D x-ray, said nerve issue, see a neurologist. Thats what he came up with. Sigh. Now we find out if any medications will help.

gobicycling

There is an excellent Facebook support group sponsored by the facial pain association. Admittedly, most of the folks there are those who have not yet found any solutions, but there is some great advice there and alternatives to what the doctor May say. There's a book put out by the facial pain association that would be very helpful.

MoAlpha

Terrible, terrible condition. Back in the day, I referred a few patients for microvascular decompression surgery, which is now standard treatment, and they did well. Meds seemed considerably less effective.

gobicycling

I had a microvascular decompression many years ago. It lasted about 3 years, and then the pain returned in full. They told me it had changed to atypical trigeminal neuralgia and they could help me no more with another MVD. This is the case with many folks who have the MVD. The drugs would stop the pain, but I had to keep increasing the dose, until I was shaking, and it caused a personality change. That's when I went for the RF nerve block. It took two of them to stop the pain and every other sensation from the right side of my face. Unfortunately, the MVD does not work or fails after a period of time for many folks.

MoAlpha

Yeah, hence the post-hoc “atypical.” It’s been decades since in read anything about it, but when it’s not compression by a blood vessel, the thinking defaults to a lesion intrinsic to the nerve. What a miserable thing. Numbness sucks, but I assume it’s better than the pain.

gobicycling

Yes I'll take the numbness anytime over the pain. It gives some strange effects such as not knowing where spaghetti is in your mouth and noodles and things like that and they dribble out and you don't know it. Fortunately my wife is a good monitor.

canklecat

Very familiar. Too familiar.

I began experiencing severe headaches in childhood. Very rarely back then, fortunately, because nobody other than my mom believed me. She'd had migraines.

The headaches became more frequent as I got older, sometimes as often as two weeks out of every month. Neurologists couldn't agree on the cause. Some said migraines, others cluster headaches. One seemed to prefer to talk about his divorce and tax problems.

I've seen more doctors than I can remember and only a couple were even remotely sympathetic or helpful. Back in the 1990s, when I had good health insurance, one GP prescribed Imitrex self injections, which was pretty much state of the art at the time (before the sublingual and nasal versions were available). An urgent care or ER visit would cost $100 or more for a single Imitrex injection, but my insurance covered entire boxes full of 'em for a $5 copay. Those lasted me for years, and continued to work long after the labeled expiration dates.

Several years ago, while waiting at a public health service dental clinic, a headache hit me so badly I couldn't hide it. A woman ahead of me in the queue told the nurse to let me in ahead of her. The dentist asked where the pain was. It was throbbing along the side of my skull and hurt to even touch my scalp. As an experiment, with my permission, he injected more xylocaine/lidocaine than necessary for the molar that needed to be pulled, numbing the entire side of my head. The pain was gone almost immediately. The relief was so complete I realized I hadn't been completely pain-free in years, until that moment.

The dentist said that sounded more like trigeminal neuralgia than migraine or cluster headache.

I mentioned that to my current primary care doc with the VA. He was disinterested. Pretty typical, though. Same reaction -- or lack of reaction -- to my spine damage from being hit by cars twice in 20 years. Despite the CT scans, X-rays and MRIs showing severe stenosis and disc damage in the cervical spine, scoliosis in the lumbar spine (from injuries, not congenital), etc., the VA doc shrugged it off and, a year after I requested referrals to specialists, he's still done nothing.

I switched to my Medicare covered replacement plan, so we'll see how it goes. I saw an ortho doc last week, who got me an MRI a couple of days later and follow-up appointment for pain relief November 1.

Regarding the severe headaches, the only pattern I've found in decades of tracking the headaches is an apparent correlation with nasal/sinus inflammation and congestion. So I use decongestants at the first hint of sinus pressure. And I take multiple nasal inhalers.

The only prophylactic treatment that seems effective has been beta blockers. I've tried metoprolol and propranolol, but more recently tried carvedilol and found it to be just as effective with fewer side effects. Metoprolol an propranolol made me sluggish and tired all the time, which interfered with my physical activities, and took longer to be effective when a headache hit. But carvedilol works quickly and doesn't make me tired and sluggish, so I can continue bicycling and jogging.

GhostRider62

The problem with trigeminal neuralgia and occipital neuralgia to a lesser extent is when going to the ER for trivial pain like a rupture appendix or broken hip and they ask your pain level and you rate it a 4 or 5, they blow you off. Yes, I have both. Lucky me. Fortunately, the trigeminal neuralgia rarely happens. I get the occipital nerves scorched a bit with radio frequency once or twice per year and that helps tremendously.

canklecat

Yeah, relative and comparative pain are so subjective and vary so much, it's practically a waste of time to bother with those "rate your pain" questions at the ER and doctor's office. I've said "6 or 7" when nurses asked, and could tell they assumed I was about to mooch for oxycontin. But I don't even bother asking for pain meds anymore, or trying to defend or explain my subjective impression of pain.

I've put up with people dismissing my migraines (or whatever they are) with "You went to the ER for a headache?" I grew up seeing people whine "Oh, I have such a headache," and continue working or playing as if nothing were wrong. To me, a headache was something that made me pass out and vomit.

I remember a former in-law who was dismissive about my "just-a-headaches" curling up in the recliner under blankets and pillows for two days after she nicked her finger with a fishing-line type edger/weed whacker. I literally crushed my left index finger and nearly lost the distal joint when it was crushed in a machine. The fingertip bone was splintered into seven pieces and hanging by a tendon or ligament and a bit of nerve and vascular tissue to keep it alive. I had it splinted at the ER, wrapped it in ice, took a couple of ibuprofen and went back to work. The fingertip healed, although the fingernail is wonky and tends to split in two pieces if I don't keep it trimmed and filed down.

Twenty years ago my compact car was t-boned by a full size SUV that ran a light at highway speed and accordioned my car. Broke my back and neck in six places. I had possibly the world's most incompetent doctor and didn't discover for weeks that I had cracked vertebrae in the lumber, thoracic and cervical spine, including the C1-C2. But I had no immediate reaction after the collision. I got my grandsons out of the car to be sure they were okay. Some witnesses helped me get them clear of the wreck. I took them to their pediatrician immediately. But two days later I was passing out and vomiting from my own injuries. That's how long it took me to react.

Four years ago I was hit by a car while I was riding my bike. Driver was looking down, probably at her phone, while blowing through a flashing yellow/yield left turn light, while I had the green and pedestrian walk signals. Broke and dislocated my right shoulder, with a winged scapula. Knocked the breath out of me but after I was able to catch my breath I stood up and photographed the scene using my left (weak) hand, including the sheepish looking driver (who later lied about what happened).

I'm one of those people who doesn't immediately respond to physical trauma with pain or shock. That comes hours or days later. In the ambulance the crew offered fentanyl -- I declined. At the ER they offered morphine. Again, I declined and said the pain wasn't that bad yet. Just a tramadol or hydrocodone would be good enough for now. They looked at me like I was an android without human pain responses. I tried to explain that would come later, but this was normal for me. Probably why I enjoyed sports like boxing and bicycle racing when I was younger -- I didn't feel any particular pain when getting hit, or during a crash.

But I definitely welcomed the prescription for hydrocodone they sent me home with. I only took it at night to help sleep. It was painful struggling in and out of bed for a few weeks.

Same with my biopsy for thyroid cancer. I declined the subcutaneous anesthetic, since that would just be as painful as the biopsy needle stick through the very thin neck skin over the cancerous, calcified thyroid lobe. The thyroid was dead and basically the consistency of a broken tooth, so the biopsy needle felt crunchy but not painful.

But I don't mind saying the lingering pain from the shoulder and neck injury was pretty bad, and still is. I got tired of the humiliating ordeal of begging for moderate opiates like tramadol or hydrocodone, which I never abused. So I tried CBD and kratom, and still use a very modest amount of kratom almost every day for chronic pain. The effect is milder and shorter duration than the cyclobenzaprine muscle relaxer my doc did authorize. I hate the way muscle relaxers make me sluggish for 24-36 hours after a single tiny 10 mg pill. Kratom works within 10 minutes, is easy to regulate to my preferred minimal pain relief, lasts for about four hours, and doesn't leave me sluggish or dopey the next day, so I can continue my usual bicycling and jogging activities.

My latest CT scans, MRI and X-rays showed severe stenosis in my cervical spine, injury-related scoliosis in the lumber and thoracic spine. I'm due for ortho treatment in a couple of weeks. They mentioned some sort of treatment that basically kills or deadens the pain nerves temporarily. I'll find out more around the first of November.

But, yeah, I no longer have any patience for people who dismiss my migraines, cluster headaches or neuralgia -- whatever the hell it is -- as "just a headache." I guarantee they've never experienced pain like it or they'd know better.

GhostRider62

I tried cyclobenzaprine, norvasc, cymbalta per Doc's advice but they cause nasty side effects on me. Fortunately, my Neuro prescribes narcotics. I rarely resort to them but when I need them, I need them.

I figured out why the pain scale irks me. It isn't really a linear scale. When your pain goes from a 5 to a 6, that is 20% but in reality it is a log scale and the pain goes up by a factor of 10. So, from 5 to a 7 is a factor of 100.

One of my scariest moments was lying in bed in agony and it occurred to my that people could kill themselves over such pain. That realization was frightening. No broken bone or sprain, etc. has ever come close from my perspective.

When I get the trigemenial, the actual episode is relatively short but it is like 1 million wasps stinking you or a thousand lightening bolts hitting you at once. The first time it happened, I thought I had died. Once the attack stops, I have pain that lingers for days until it dissipates.

canklecat

At my recent ortho eval for cervical spine pain the doc suggested we consider Cymbalta. I told him I'd read about it and decide.

After reading about, I'm not impressed. It sounds like yet another variation of a placebo for folks with chronic pain that the docs can't do anything about because they aren't permitted to prescribe opiates, or they're afraid of legal problems, so they're hoping to distract patients with stuff like gabapentin. If we're gonna do placebos, I'd rather try something that has zero side effects. I'm very wary of meds that were repurposed after the original R&D fell through or wasn't profitable enough. When I hear that a relatively new prescription med was developed for one purpose, but now they claim it's also helpful for anything ranging from depression to chronic pain, it starts sounding an awful lot like snake oil. At a minimum, it comes across as condescending, implying that our pain isn't real and all we need is a different colored gumball to make it go away.

I'll just continue using kratom as long as it's available, and occasionally OTC analgesics like acetaminophen and NSAIDs. I might resume CBD, but it's awfully expensive for what it does, although it has less potential for harm than acetaminophen and NSAIDs. I keep hoping the VA will put CBD on the formulary, but even if they do it'll probably be the THC-free isolate that's less effective.

But I'll wait until after my upcoming ortho appointment to discuss some sort of nerve block technique.

WGB 

I was sent to a specialist who prescribed Gabapentin and for me it worked when the pain hit though I generally cycle from a couple to the max dosage quite rapidly. I can't say it would work for anyone else.

In the back of my head there's always the memory of me telling the specialist that the pain had suddenly gone away and the specialist telling me that it will come back and each time it will get worse and she was right and each time it's worsened. Hopefully the cure this and soon.