Tuesday, October 22, 2013

Kristen's Little House of Horrors

AKA: What this Feels Like

In honor of upcoming Halloween, and since I am constantly asked what my Trigeminal Neuralgia feels like, I thought I'd give everyone a fun little scare and welcome you to my own personal horror and let you into my virtual head where you can experience it all firsthand and then leave without ever experiencing it again! Lucky you! Come in, come in! I won't bite! ahahahah.

 Enter at Your Own Risk!
All Effects Are Magical and Temporary or your money back - Guaranteed!
(Now please sign this consent form that you will hold none of us liable for any and all lingering effects and or terror that may be a result of this experience. Thank you. You may now continue.)

Please enter one at a time, watch your step, that's it, leave your personal belongings at the door thank you. Yes, you are now finally entering the Kristen's Little House of Horrors.

 This is a bare cold semi-lit warehouse room like a scene out of The Walking Dead. A single chair, much like a dentist's chair is in the middle of the room, with a metal tray next to it filled with odd contraptions and needles and sharp pain inflicting devices. The legs, arms, and headrest of the chair have straps. There is a single light bulb hanging on a string down above the chair.

Please, sit down. Make yourself comfortable. Or as comfortable as you can.
You sit.
Your arms are tied down. Your legs are tied down. Your forehead is strapped to the headrest.

This is merely for your own safety and for the safety of those around you.

ok. I now need your verbal consent that you are ready to proceed. yes? would you like to muffle your screams, yes or no? no? ok then.

- We will first tape this electrical impulse wire straight across your cheek which will direct a steady ache deep in your cheek bone. There.

- Now, we are going to inject another one deep into your ear to cause a terrible constant ear ache.

- Just a second while we set up the needle darts to periodically shoot into your ear drum. There... we... go.

 - And then, hmm... this one's tricky... this is a metal clamp with sharp teeth that will randomly clamp the outside of your ear.

- Now, we're going to take this tiny needle and slide it up in between the skin and the bone right here on the side of your nose. Yes, feel free to moan, groan, or scream if you feel the need. That's no problem at all. Go right ahead.

 - And we will insert another needle up here along your eyebrow.

- And put one right going right across lower eyelid.

- And then here we're going to put another randomly clamping metal clamp on your upper eyelid. Ah, perfect.

- And these eyedrops will make it feel like your eyeball is going to explode. Very good.

- Now that we have those in place, we will now have these hypodermic needles randomly timed to be stabbed in your face, right there across your cheek, in the roof of your mouth, in your upper lip, in your lower jaw, in your temple and in your jaw joint.

- ok, and now open your mouth please and say ahhh? no just kidding no need to say ahhh... we will now be performing root canals on each and every tooth on half of your mouth .... without anesthetic.  Yes I'll just slide this in to keep your mouth open.  Please stop screaming now, thank you. Remember there won't be any lasting effects from this, it is purely magical and just for fun.  Isn't this fun?!?!?

Yessssssss...... drills please................. there, that isn't so bad, is it?!?!?!?  is it??????

ok, just one more thing.
- Here is some unflavored pop rocks candy I'm just going to place on your tongue right here.... to let sizzle and pop a little bit.  There.

- And then oh I forgot, one more electrical current on your cheek to make a little buzzing now and then.

- oh and we'll occasionally hit you on the side of the head with a hammer too just for fun - watch out for that

Most of these are completely randomized (except for the constant aching currents). You may feel all of them, several all at once, or none, in completely random patterns, lasting for several minutes or seconds, over and over again, or not at all while you are here. Good luck to you.

And now that you are all hooked up and feeling the pain of trigeminal neuralgia, the real fun begins:

You can now choose between several specialized torture chambers to complete and personalize your horror experience or we can randomly choose for you between the following options OR you can cycle through them all for the optimal House of Horror PAIN Experience:

1. The Helping-Grumpy-Kids-With-Homework Torture Chamber

2. The Fighting-Whining-Children Torture Chamber

3. The Going-Over-Finances Torture Chamber

4. The Going-Shopping Torture Chamber

5. The Driving-with-Kids Torture Chamber (optional Driving-in-Traffic add-on)

6. The Trying-To-Think-About-Anything Torture Chamber

ok, you'd like to cycle through each of the torture chambers? Excellent choice, that will give you the optimal House of Horror Pain Experience. Your torture chair is equipped with automatic wheels that will take you through each of the chambers and then bring you back to the entrance where an assistant will disconnect you from the device and magically erase all of the painful effects and you can then collect your personal belongings and go about your day.

Thank you for visiting Kristen's House of Horror's! We hope you enjoyed your visit! Be grateful that you can leave this experience behind and hopefully never ever come back again. And we hope you have also gained some insight and understanding.
Happy Halloween!

Tuesday, October 8, 2013

Teal for Trigeminal Neuralgia Awareness

Yay for TN awareness day! My sweet daughter really wanted to support me by wearing teal and my husband willingly wore the button I bought for him.:) I tied ribbons on our trees and wore my TN super hero shirt, even though I didn't really leave the house.

Also, through the miracle of the internet and one of the support group pages on facebook, I was able to connect with another trigeminal neuralgia sufferer who lives just one city over from me! I'm not alone! Hallelujah!! She decided to have an honorary dinner of soft foods for TN day (since chewing often causes pain for those with TN) and she invited me over to join her and her family. So nice!  It was so great to meet her and talk to her for awhile. She is trying a new experimental physical therapy treatment here developed for TMJ disorder and is having some success so I'm excited to see how that turns out for her.  Her TN is complicated by also having lifelong narcolepsy so she can't take the typical medications that I've been trying. It was very interesting comparing symptoms and what we've been through. So many similarities and differences.  Everything is so individual. Trigeminal Neuralgia is a beast that likes to take your little brain and just storm through and hack away at it - but everyone gets it hacked at differently. Ugh.

And we all describe our pain and live through our pain the best we can and try to do the best we can and we can't really compare ourselves one to another.  It's hard not to. I really struggle with that. I know my pain is not as bad as some and then I still can't figure out why I can't handle it as well as some other people seem to be able to. But then I really don't know how bad their pain is. Perhaps we are just talking about it differently. Perhaps our medications are just affecting us differently. Perhaps my other conditions are affecting me in a way I am not giving myself credit for. Perhaps I should be more patient with myself. Perhaps. I really don't know. I can only do what I can, I guess. And try not to compare in any way. I'm just doing the best I can. Oh, Please don't judge me... and I will try my hardest not to judge myself.

Monday, October 7, 2013

Happy International Trigeminal Neuralgia Awareness Day!~

Today marks the first ever International Trigeminal Neuralgia Awareness Day and so of course I have to bring this to your awareness!  This has come to pass through the hard work of a group I have come to admire on facebook, a small group who has called themselves the TN awareness fighters who themselves suffer from the condition. They have spent countless hours over the last months in this past year organizing and emailing, writing letters, making calls and whatever else they can to bring this awareness day into reality. They have sent a petition to the World Health Organization with over 10,000 signatures asking that Trigeminal Neuralgia be added to the list of new considered Health Topics which means it will be considered for funding and research with the WHO organization. For the awareness day, we now have an awareness color and ribbon and will have buildings and towers and fountains lit up in Teal for awareness. And they've designed photos to use for facebook backgrounds, t-shirts on zazzle.com, posters, mugs, buttons, (with profits being donated to the Facial Pain Research Organization). It's amazing!

So why do we need an awareness day for Trigeminal Neuralgia? You already know about my daily pain... the constant aching in my cheek, teeth, ear... sometimes eye, jaw, nose, lip etc. The stabs and jabs, buzzing, stinging, pinching. It's 24/7 for me, with some days worse than others. Sometimes I function better than others. Sometimes I just can't think, when my eyeball feels like it's going to explode for instance. Other times I am doing ok. But anyway - I feel like I've explained my pain in other posts. You know a lot about it already. And I'll do an update another time (things are basically the same, somewhat worse actually).

 But let me just share two stories I heard just the other night to illustrate why I think awareness is really important.  One was about a person, a grown son of a TN sufferer went to the Dr and saw a nurse practitioner and was telling her about his mother with trigeminal neuralgia and the upcoming awareness day. The NP told him she had never heard of that. Never heard of it. So he explained the symptoms to her. She said she thought that sounded like something someone had made up to get on disability.  Made up?! Ok.

Then, the same night another TN sufferer vented that she was working at her job as an ER nurse and told them about the awareness day coming up on Monday.  These nurses proceeded to make fun of the TN awareness day and the people who come in with the pain of Trigeminal Neuralgia into the emergency room seeking relief. They were making fun of people in excruciating pain. They were laughing about it.  They obviously had not idea what it was really like. They didn't get it. How can people like that even work in a profession where they claim to help heal people?! It's mind boggling.

This is why we need more awareness.  We need more nurses of all kinds to know what it is and to take it seriously. We need Drs who know how to treat it.  We need better treatments that actually work.  We need research. We need people to be aware and to be compassionate. Please just be compassionate. And someday, please, we need a cure.

I can't live everyday of my life in pain.
No one should have to live like this.
And I talk to people and I read these stories and I know my suffering is considered a milder case of this condition, on the milder side at least, which just seems almost laughable considering what I go through at times. It's hard to even comprehend. This pain is no joke.
Please do whatever you can to spread awareness.
Wear some teal and tell someone why.
Tell someone you know about Trigeminal Neuralgia.
Change your facebook profile to a TN photo.
Share a TN photo or infographic.
Look up Trigeminal Neuralgia (classic and atypical) and become more educated.
Be extra compassionate towards someone today.
(bring me cookies?  - kidding.)

You never know what effect you might have.

Thank you.
(and thank you to all of you who have already done any of the above to show your support to me and others who are suffering from this. I can't even really express how much it means to me. Really, thank you so much.)

Check out these links for more info or google search. I regret that I can't link to all the really moving personal stories that have been published in relation to the awareness day. It's amazing:


Related Posts Plugin for WordPress, Blogger...