Some days that is what I really want to do. If I could just make that half of my face disappear, I could live a normal life again. I don't even care if people stare at the half faced person.
Ok. I know it is not realistic but I am on my third dose of narcotics today and it is not even taking the edge off. I want to scream and cry and punch something and curl up in a little ball and have my fairy godmother make it all better. My family doesn't understand (or are too little to understand.) Complaining doesn't make it better. I am cranky and irritable and short tempered and frustrated and most of all, in excruciating pain that I can't get rid of.
Stay away from the knives, stay away from the knives....hmmmm....I wonder if scissors would work....
Sorry if I am being goofy. I would laugh at the whole thing if it didn't hurt to laugh. I am probably not making much sense either but at least it has distracted me from some of the pain for a few minutes...
I hope this storm isn't making anyone else as crazy as it has me!
Hang in there, Dana! THE storm will pass! I just learned this past summer how weather could effect me. Pain would be bad for hours before the storm would hit but would ease up before the storm was even over? I didn't get it, but hope the same happens for you. When Michelle(in CT) called today, her pain was of the charts too. Keep writing and keep distracting all you can. We are here.
This sounds so familiar. I can’t tell you how many times I have said the exact same thing! I’m truly sorry that you are going thur this. I’m new here and I didn’t know anyone could understand EXACTLY how I feel, although I wish you didn’t.
Hi, I’m happy you are here, but sad that you are in pain. Like Sara said…
‘hang in there, it will pass.’ I just had one of my worse days in a while & I didn’t realize why until I read your post. On Sunday, I was cooking dinner & as I was talking to my daughter at the kitchen bench, I had this terrible stabbing pain to the side of my head! I was already struggling with the 24/7 boring pain. I live in a really beautiful warm place, but now it’s storm season! So here I was thinking how nice it was that it had actually cooled down enough & I could put the oven on & have a hot meal. But then came the rumble of thunder & the lightning! Not just in heaven, but in my head! So yes, storms definately affect TN! I’m sorry it so bad that you want to cut the side of your face off! But I totally understand! When you have an attack, it’s like you would do anything to stop it. I become totally irrational and have the urge to smash the side of my head through something! Or hit myself with some thing hard! No one understands the torture that we feel! Except us! (((Hugs))) Sally
I can definately identify with you, Dana!! Some days I just can’t resist the urge to throw a fit, kick, and cry b/c it’s the way it is. I feel cornered sometimes b/c my only choices are pain, narcotic induced confusion, or brain surgery. I’m sorry to hear that you are having one of “those” days, but like the others said: “this, too, shall pass”. On days like those the ray of hope that i hold on to is remembering that once upon a time I had no clue what the problem was, and there was no clue in sight. Better to keep my mind on the solution rather than in the problem. Sounds so “elementary” but whatever works, yanno? I hope this message finds you feeling better. I had no idea that storms effected my pain…so i do appreciate that you provided a place for me to understand more about my condition. thank you hugs
Before I knew what I had I began to notice a pattern, when the barometer would drop my face was at it’s worst. My kids would notice my pain and would run over to the weather center a say "sure enough mom the barometer has dropped. The doctor used to call them head aches/migraines, even though I insisted the pain was defiantly in my face. I haven’t read that weather effects TN pain but this conversation seem to point in that direction. The last two day have been getting to me also.
Sally said:
Hi, I’m happy you are here, but sad that you are in pain. Like Sara said… ‘hang in there, it will pass.’ I just had one of my worse days in a while & I didn’t realize why until I read your post. On Sunday, I was cooking dinner & as I was talking to my daughter at the kitchen bench, I had this terrible stabbing pain to the side of my head! I was already struggling with the 24/7 boring pain. I live in a really beautiful warm place, but now it’s storm season! So here I was thinking how nice it was that it had actually cooled down enough & I could put the oven on & have a hot meal. But then came the rumble of thunder & the lightning! Not just in heaven, but in my head! So yes, storms definately affect TN! I’m sorry it so bad that you want to cut the side of your face off! But I totally understand! When you have an attack, it’s like you would do anything to stop it. I become totally irrational and have the urge to smash the side of my head through something! Or hit myself with some thing hard! No one understands the torture that we feel! Except us! (((Hugs))) Sally
You are right. No one understands the pain or the cause. I have suffered for 13 yrs and I'm done. I only wish I was done. I finally had MVD after Gamma Knife and I still suffer. Only its different. If I had it to do over, I don't think I would have had it done. The side effects of nerve damage are horrific. Of coarse they don't tell you that before hand. No drugs since the MVD have helped. I'm really getting desperate. And after surgery they are done with you. I know my husband is tired of me complaining. No one, no one understand what we go thru. It is truly a curse. All of these years and not one of my family understands. By night time my face hurts so badly---can't explain. So what is the solution?
I say I have to hide the pliers because sometimes I want to pull all of my teeth on the left side and then cut off that side of my face...you are not crazy...just sharing what most of us think sometimes. Hope today is a better day. :)
Dana, know that you are not alone, I am fairly new, have only had TN type 2 for about three months, constant unrelenting pain. At one point I actually researched " jaw amputation" sounds silly but I was desperate to have the pain gone. Hang in there.
You sound like agreat guy with lots of wonderful input and info! Just a word of caution from a 59 yr old grandmother who has counseled a lot of people through rough things in their lives. It is really not helpful to point out to a suffering person that others are going through tougher things. God gives each of us our own crosses to bear and only He knows what we can endure. What would completely crush one person, could be accepted easily by another. So compassion is what each hurting person needs from us. Keep up the good work and info.
Peace,
Yvonne
jake said:
hi dana , just remember 14 people died in the hurricane sandy ...try other kinds of meds like bipolar meds etc... it never hurts to see what could resolve...enjoy the warmth of hot cocoa
My family says I am a walking weatherman. If they want to know if it is going to rain they just ask me. I should get hired by the local tv station. I have better predictions than they ever could!
AlyssaBella said:
Before I knew what I had I began to notice a pattern, when the barometer would drop my face was at it's worst. My kids would notice my pain and would run over to the weather center a say "sure enough mom the barometer has dropped. The doctor used to call them head aches/migraines, even though I insisted the pain was defiantly in my face. I haven't read that weather effects TN pain but this conversation seem to point in that direction. The last two day have been getting to me also.
Sally said:
Hi, I'm happy you are here, but sad that you are in pain. Like Sara said..... 'hang in there, it will pass.' I just had one of my worse days in a while & I didn't realize why until I read your post. On Sunday, I was cooking dinner & as I was talking to my daughter at the kitchen bench, I had this terrible stabbing pain to the side of my head! I was already struggling with the 24/7 boring pain. I live in a really beautiful warm place, but now it's storm season! So here I was thinking how nice it was that it had actually cooled down enough & I could put the oven on & have a hot meal. But then came the rumble of thunder & the lightning! Not just in heaven, but in my head! So yes, storms definately affect TN! I'm sorry it so bad that you want to cut the side of your face off! But I totally understand! When you have an attack, it's like you would do anything to stop it. I become totally irrational and have the urge to smash the side of my head through something! Or hit myself with some thing hard! No one understands the torture that we feel! Except us! (((Hugs))) Sally
