It's hard to describe....

Today, for the first time in a while, my Trigeminal Neuralgia is raging. It's been flaring for over a week, which is fun enough, but today I woke up with a migraine I couldn't head off. It triggered the face pain, I got frustrated, I cried, which caused my sinuses to close up and swell.....BAM, worse case scenario ensues.

I'm writing this to vent it out and to put it out there on the interweb, so that if someone googles & finds this, they may see what got me through on one day. What it looks like for one other person.

Trigeminal Neuralgia is not well studied at this point in time, it is not well understood. There is no cure, the treatments are limited and often ineffective, it's diverse in its presentation and our 'specialists' are few in this world. Many neurologists are not TN endorsed & we are left to do a lot of research on our own to get through.


To try describe a flare, or worse, a rage, is near impossible, but if you were to imagine the simultaneous occurrence of unmedicated crowning of a baby but in your face + dental work before you were numb + being bludgeoned in the head with name your blunt force object (all of which I have indeed experienced separately), that might come close. Add migraine.

There wasn't a way to talk, to move from the spot I was at, to swallow meds. The whole thing had me shaking, writhing my feet, goosebumps & dehydrated. It wasn't just a 'my face hurts' ordeal.


It worsened in waves. I ended up muttering peppermint oil to my husband who found it for me. I lathered that stuff all over my sinuses, undiluted....feel the burn. It did 2 things for me. First, it made an intense burn on my sinuses, which diverted it for just a moment from the entirety of my migraine and my trigeminal nerve as a whole came down one notch. But mainly, it did get my sinuses to drain to be able to breathe and have the drainage quit going down my throat making me more nauseous as well as to relieve pressure of my sinuses on my trigemninal nerve.

Once that was established, I was able to swallow pain relievers to take the edge off the migraine. Acetaminophen and caffeine in large doses can do this if you're lucky enough. Any little bit at this point was a win.


Once that kicked in I was able to sip water & use some more supplements (magnesium, oils, turmeric) to bring down the TN a bit more. 10:30- 4:30pm was how long a laid thrashing & crying & grasping whatever was close with my head wrapped in a blanket not to let the slightest light or touch through.  An entire day wasted. But it was just one day. There are more days.


Even through this episode, I cannot get myself to surrender to the anti epileptics. It was just one day. To trade in the freedom of any other good day I may have feeling myself....not worth it. Meds are everyday. I can't do their side affects every day. This was just one day. Some days are better than others. It was just one day.

A glimpse: https://youtu.be/rWCdXy6TYUE 

Today is my last day being 33....that's okay with me.

After today, I will no longer be able to pretend to be less than in my 'mid thirties', something I've felt for a while now anyway. Today is my last day being 33 and it's okay with me. 

What did I do on my last day being 33? 

A 5K. My 2nd 5K of the month. My goal was to have my knee & my guts strong enough to do the Rodeo Run on the 4th of July & they were. It had been 3 years since I had participated in it instead of helped at a table. It had been 3 years since my last 5K event. It had been my 1st 5K since having Joe, since surgery, since knee injury. I wanted to push the kids in the stroller, the stroller is a killer crutch & security blanket. My friend told me to suck it up and get out there, get a base time again, hit the reset button & work through to getting back into it. She's a good friend. She puts on that race. Then today she paced with me to improve my time (by a whopping 11 seconds- but improvement is improvement), she can go waaaaay faster & was totally doing a solid for me by pacing me. I woke up with a stomach bug (really?!?!?! it's summer!?!?! Joe also has a fever of 102-103!!! You're not supposed to get sick in the summer!!!!) and I was really worried about making it....but "Let's do it anyway" is my new mantra. I mean, most days one thing or another is waring on me, if I waited for a feel good day, I may never leave the house again.

On that note......checking in on health:

My knee feels it after those 5Ks but not enough to stop me. Let's do it anyway.

My H&P surgery.... forgot all about it!
Feels great not to drop into anemia territory every few weeks & I do not miss a certain isle at the store. Unfortunatley the only downside here is that it can't fix the hormone imbalance from the Polycystic, that is still there. I tried to get off ALL Rx meds, if you recall, when I went rogue after post surgery complications. That went well until my 6 week post surgery appoinment when discussing the effects of not taking the metformin. My ovaries were left in after my genetic screening for BRCA 1& 2 (a mutation that runs in my family) came back negative. In leaving them in, my risk for other types of cancers remains far lower. My doc showed me those ovaries (they take pics of your insides with laproscopy, it's kinda way cool) and they were HUGE, way bigger than they should be & looked like golf balls instead of smooth even with taking metformin for 8 years, the PCOS is kicking their butt. The metformin is the only thing keeping them from being even more out of control & the only thing resembling certain hormones I lack to adequately produce. Soooooo, I started taking it again....unfortunately this means my immune system suffers & my body is sun sensitive. Let's do it anyway.

I am still NOT taking the antiepileptic drugs (AEDs) for my face nerve condition (trigeminal neuralgia), I take a handful of supplements and steer clear of certain triggers and get by with the day to day zingers of pain. The AED side effects take away quality of life, I'd rather feel the zingers. Chicken is a big trigger, I really like chicken, sun is a HUGE trigger, I like to be outside..... Let's do it anyway.

I still have not gotten back into the dentist for my crown repair & am scared of what will be awaiting me when I wake up from that procedure in the face pain department. It will have to happen as the tooth keeps slowly chipping away and some day its going to expose the nerve (by the way if that has ever happened to you, a crack or chip or dental injury where your nerve had been worked on or exposed....that is similar to what Trigeminal feels like when it flares). Any day without a flare with TN is a good day.

The autoimmune stuff....it was fairly ignorable until the rains stopped and the heat amped up this week. The heat is like a traquilizer gun for me. I get real nasty cases of 'the dropsies' & lose sensation in my apendages....something I've decided is not all bad for running: legs go numb, run anyway, hands go numb, you don't need them to run. Let's do it anyway.

I'm pretty locked into the house in the a/c from 10am - 6pm ....but I've got enough to do around here during that time....

I made the decision to take a sobbatical from teaching preschool & focus on health, homeschooling & bucketlist projects next school year. As a result my main summer project has been to rearrange the basement, take down the preschool, put the living room & craft area there, make a playroom, homeschool nook, and 2 more bedrooms (where the living room and craft area were) so the kids are all back into their own rooms. This is a no cost opperation. By making rooms, I mean putting up sheets as dividers. We did paint over one wall in the preschool area where we will be putting the tv as a focus wall. Its been a slow and emotional process. I'm about 1/3 done. looooots of stuff.















Goal: done by rally. It's about to get even busier.....our 1st experience as parents of a high schooler coming right up!