I read a blog somewhere that described our pain so well, but now I can’t find it. How about we describe it, so maybe we can get people to understand how intense it is. Any willing?
I think this is what you are looking for.
http://www.livingwithtn.org/forum/topics/a-writeup-about-caring-for
Like a lightning bolt striking your face! Or something people can relate to: It feels like when you hit your funny bone but 10 times worse, or when you have a cut and you clean it with alcohol...only 10 times worse! Anyone else?
Worse than Childbirth --- worse pain known to man - enough to make people jump off cliffs --- sawing your legs off with a chainsaw would be less painful than Full TN attack
I called it police tazers on my face
I describe my pain as dentist drilling all my teeth at once sans the novicaine. My pain is generally in the jaw.
It feels like someone wired my offending teeth to the mains then tripled the wattage and stood back and laughed while I hit the floor with my knees or jumped up literally, from the chair I am sitting on. I did once shock myself and of course lived. That was no where near as severe!
http://www.facingfacialpain.org/index.php?option=com_content&view=article&id=134&Itemid=111
It comes with illustrations ;)
Feels like being electrocuted with an ice pick, stabbing/zapping you over and over!
I tell people that my TN is like getting randomly stabbed in my forehead by an electrified ice pick. I’ve read other similar descriptions by people. Since my episodes only occur in the peripheral branches in my head, I can’t say what it feels like in the face and jaw. I would like to know if others have the type that I have that are short (1/2 second) but excruciating and sometimes happen up to 500 times per day. I new to this site so I’m still trying to figure out where to post things.
Always, the ice pick
a shark biting into my face over and over, sometimes making me barf it hurts so bad
left cheek terminally numb from eye to jaw
fireworks and lightning inside my jaw
sharp stabs and zings in my front right tooth
throbbing, insane, aching black hole deep in my face that pulses with my heartbeat like a cartoon
A zolt of electricity that shoots through my jaw and brings me to my knees or fall on my face....never knowing when it will strike.
Well i used to describe it as an angry lepercon beating me the face with his pot full of gold randomly through the day. Then the jerk would give all the gold over to the doctors. This was usually to good friends.
More serious description is left to my old man and the doctors. Sorry if this seems a little grahic to anyone. It is so hard to pin point what this pain is at times. My face can be just a ball of shear pain. On the roof of my mouth and thru my nose feels like jaws life going full force with pressure and ripping my flesh off, on top of that my bones feel broke. My cheeks and lower jaw feel the same. My lips feel as if someone is ripping thru them with a dull spoon. In the last day between my gums and cheeks that feels like it is being sliced open. Teeth that are now longer feel like they are there and being cracked for extraction. The side of my feels like its being slammed into and drag down pavement. On top of that all, there can also be those pricks of shocks, fire, and burning. The later seems to be most in control right now. Lastly I get dashes of pin pricking numbness sprinkelled here there.
I would go through childbirth with out an epidural a million to the sixth power times, and I had a continuous epidural drip both times. I hated that pain even still with those drips. The tn pain trumps all other pain I have know, and it bites.
I guess since I started this discussion, I should give my description as well. My pain is all over the map, there are times that it feels like something is ripping my eyeball out of its socket, then it’s the constant electric shocks, then an icepick stabbing various parts of my face. Then usually I have continual itching sensation, causing me to rub my face, triggering some other pain. For a while there, every night it would itch deep behind the right eye that I felt I could take my eye out and scratch. It also constantly feels like there are crawlies all over that side of my face. Then the toothache pain. I describe all of this and to read it, it doesn’t sound like much, but believe me, it’s 100s time the description and causes me to completely stop what I am doing. It has caused me to not eat, talk, laugh, etc. I HATE this.
For such a long time all of these things happening so randomly, that I didn’t think much about them. But for the past year and a half they have become a part of everyday life. I am in the process of getting in to see the neurologist, but they haven’t made the appointment yet, so I wait. I am going to become a squeaky wheel, so I am not forgotten. Until then, my dr put me on Lyrica, and it seems to be helping somewhat, I still have some breakthrough pain. I was put on gab, but it did nothing for me.
So there you have it, that is my description.
My pain feels as if I have a fire lit inside my cheek, a knife stuck in my jaw and another knife stuck on my temple, sometimes add to the fire in the cheek somebody is pulling out two teeth on the top in cold blood without any anesthesia. Have you seen those movies where there is a canibal eating people alive and those people die? Well that's what I think is happening sometimes.
I have to add to this, that I had three children with no epidural, endured the pain, then for my last baby I had stitches done in with not anesthesia, and that was not as painful as what I am feeling right now.
My heart goes out to all you, as I read your pain, I'm almost crying just thinking of what you are going through, especially because I know exactly what you are going through. May God have mercy on us and heal us.
When I get a type 1 attack in my cheek on the cheekbone area, which is where it is always the strongest, I liken it to an electrified sword being stuck in my face and constantly twisted. I have given birth twice with no pain relief and I said to my husband I would take that any day over the TN!
Oh my gosh, the fire and the knife etc is EXACTLY it. So good (or rather unfortunate) to know others are going through the same thing.
Mitzi said:
My pain feels as if I have a fire lit inside my cheek, a knife stuck in my jaw and another knife stuck on my temple, sometimes add to the fire in the cheek somebody is pulling out two teeth on the top in cold blood without any anesthesia. Have you seen those movies where there is a canibal eating people alive and those people die? Well that's what I think is happening sometimes.
I have to add to this, that I had three children with no epidural, endured the pain, then for my last baby I had stitches done in with not anesthesia, and that was not as painful as what I am feeling right now.
My heart goes out to all you, as I read your pain, I'm almost crying just thinking of what you are going through, especially because I know exactly what you are going through. May God have mercy on us and heal us.
To explain it to my kids, I told them that it's like when you mistakenly bite down or chew a little piece of aluminum foil. The "zaps" just keep coming, though.
I have used that exact description but I tell them it’s 100 times worse.
You've all heard the description of Blinding Pain. The phrase must have been coined by someone with TN. There are moments that the pain is so intense, my brain literally is too incapacitated to interpret sight. A car could be racing straight at me and I wouldn't know it. I can't hear anything or smell anything. If you were stabbing me, my brain is sooo overloaded with the facial pain, I would not know. It's completely disorienting. It's as though I'm abandoned in the universe with no senses left but this Pain in my face.
I have only but experienced the jolts of sudden pain that TN mercilessly doles out. For those of you who experience the more constant pain. I sincerely don't know how you take it.
I am so thankful that my meds keep this at bay. I actually live in fear of poverty or war or any reason I would not be able to fill my prescription. This is not an addition, I would go through no withdrawals, its just shear fear of the pain.
To those who do not experience this, it sounds like a drama competition. But the truth of the matter is .... words do no justice.
To those who do not experience this, it sounds like a drama competition. But the truth of the matter is .... words do no justice.
I'm with you there. I have only had one horrible attack of the constant horrible pain and remember telling my dentist that "this was the worst pain I've had in my life". The tears would not stop even if I wanted them to. Right now I am feeling the shocking pains that last 15 seconds at a time. I have also had horrible migraines since I was a child and as bad as those were... nothing compared to that horrible pain.
I think we all worry about not getting our meds or waiting for that horrible pain to return. It's an issue for those who have TN. Even docs say. Don't make a problem about it and get anxious but then they have no idea how truly unbelievable this pain is. It is UNBELIEVABLE for those who haven't experienced it. The pain that I think that would compare is burn victims. But then I don't really know what that pain is like. They also say bone pain is one of the worst.