I was just diagnosed. I also have Cluster Headaches, so I’m familiar with how helpful sites such as this can be, even life-saving. So here I am
My jaw/cheek area is not as tender or as swollen as it was yesterday and the number of triggered-attacks has diminished (zero so far today). I was able to eat all meals so far today and drink without issues. But! That’s the kicker, I can still feel that the episode (maybe it’s the TN2?) is somewhat active. My question is:
If I continue to to laugh/smile/talk during an episode that seems to be dying down, do I run the risk of aggravating the area and extending the episode?
I’m still learning the terminology and what not, so I hope what I asked makes sense. I’ll provide more info on my story and background ASAP, I just had this pressing question throw out there.
I have no idea but just thought I would say hi.
I thought the drinking bit might be helpful(just joking)
So I guess my question would be that you mentioned you have two things
Tn2 and cluster headaches.
Anything else?
It is so frustrating -what the heck is TN2?
Since my initial post, the episode of TN has passed. It was the first time it remained so sensitive for so long (4-5 days).
I’m 39m and I had gotten similar “zaps” to my face/jaw before, but they were one-and-done, maybe once or twice a year. Always thought “omg, wtf was that?!” but I would simply adjust how I chewed and it would go away.
This last time, I stayed susceptible to attacks for several days.
Does this sound like the typical progression of TN? Trying to get an idea of what to expect and when, progression-wise, if at all possible.
Man I hate it for you (us)! Sometimes, some things are sure fire triggers. Once I get wore down I do my best to avoid every one possible. The biggest culprit in my experience is stress. If I’m stressed out and feeling ‘Joker Face’ - a sensation like the tissue under my skin below my cheekbone is drawing itself up, I can’t help but get fearful. So when the sky starts to turn orange as dusk falls, I get a little panicked wondering if the pain is going to ramp up into an episode. So that adds more stress, it’s a vicious cycle you can’t overcome with rational thought. Humans always listen to their emotions before logic and reason.
Work at finding self soothing options and remembering to breathe. Pain often causes us to take short gasps of air and hold our breath but there is impirical proof that greater volumes of air increase pain tolerance. One of the things I do when it is really bad is to turn in circles while I hold my cheek and huff lavender oil. I’m sure it’s quite a sight.
Other times, if I catch it before it gets too rock and roll, I’ve found serious hard labor keeps it at bay. Sometimes I have to wear a knitted muffler around half of my face while I work - even in the Summer, in Florida but clearing land, splitting wood, hours on the chain saw, building fence line, etc keeps it at bay and when I’m just too tired to take another step the come down off the natural endophins lets me get at least a little sleep.
Great description! I’ve experienced this a few times prior to knowing what TN was. Does smiling make it worse for you? I feel like in order to keep it from getting worse, I have to really dial back any and all facial expressions, specifically smiling.
I have ATN or TN2. I understand what you’re saying about being sensistive but not exactly zapping and how you feel like you’re susceptible to attacks.
When my face “feels funny” in even the vaguest of ways I use a strip of lidocaine patch along the nerve branch that feels “off” to me. It’s not an immediate fix or obvious relief but it seems to calm the nerve for me and I have found I can head off an actual attack by reacting to that funny feeling and using lidocaine on it.
You can get the patch OTC in America and Canada as SalonPas at 4% strength. You can get 5% strength via prescription but usually need a prior auth for insurance to help with the cost as you would be treating a non-standard/rare condition with it.
So I understand the things that trigger attacks, but is there a prevailing theory as to what triggers the periods of “susceptibility” to attacks?
For example, roughly 30 days ago (my first post), I was “susceptible” for several days and had several triggered-attacks. Then things calmed down and I completely returned to normal. But just yesterday, I’m now back in that “susceptible” zone and getting attacks, eating, drinking, smiling, etc.
Can anything be done to mitigate susceptibility? (preferably without pharmaceuticals - I’m finally off all of them - and now this)
Mitigating susceptibility is going to be much like managing migraines/cluster headaches – do what you can to avoid personal triggers and hope for the best.
If you search prior posts you’ll find several conversations about diet and things like that, I’ve never had success with diet and TN/ATN although I have found food triggers for my migraines and avoiding them helps everything overall.
My best advice to you is to not swear off pharmaceuticals – be they OTC, supplements, oils, or prescription – think of them as tool.
