Can anyone relate?

I have a wrap for my head and try to only go from car to wherever and then back again. I'm going to have to get out and buy some more of the warm packs to take in case I'm running late and can't warm the car up.

Is cold a trigger of pain for anyone else? Is that a common pain trigger? I've really never talked with others who live with TN. I've been pretty isolated with this.

What other pain triggers do y'all deal with? Is your pain constant with times of flares as mine is? Have you found things to help active pain flares, or help to prevent them?

Basically, if anyone can share their experience with this, it would be appreciated. Again, I've never talked with anyone else who lives with TN.

KD

I just read Jeanc's post and am going to visit those sites as well.

KD

Hi, Kimmy,

I see you've already seen my attempt to rebuild our "Newbie" thread - Tips for Newcomers. Ella is going to add her advice as well and then, since you're an admin, maybe you or Bobbi could make it a Sticky thread for us, so the newcomers can see it when they first come to the forum and it doesn't get lost among the other threads. Thanks in advance!

And yes, cold is a trigger for most of us. I'm a skier and, though I usually wait till the weather gets warmer, it doesn't always work out that way and I had a hard time the last two years. When my pain was at its worst, I didn't ski at all that winter - or do much of anything. It was a particularly cold winter and I lived on top of a hill - ugh! As I said in an earlier post, I don't have TN but some kind of neuritis/neuralgia that did/does react to many of the triggers. I had a problem with chocolate for a while.

Have you tried a Turtle fur or other brand of microfleece neck gator? Very soft fleece tube that goes over your head and you can pull it up over your face - hopefully in such a way as not to set off any light touch trigger areas.

Heat can also be a trigger. I know direct sunlight makes my painful area sting as if it's already slightly burned. Also, stress and/or fatigue are common triggers. I had no problem flying out to Portland, OR, for the TNA Conference until the end of the trip when my face started to ache. Did the same thing both directions and since it took two planes/flights each way and it didn't bother me on the first landing I chalked it up to the stress of travel and the end of a long day.

Have you gotten a copy of Striking Back? If not, please do order one - as I said in the Newcomer thread, it's a must read for anyone with face pain - will help you with a lot of your questions.

Glad you found us and thanks for posting your story. It will help others as they come in, and I know how good it feels to get it all down especially when you know those reading it will understand. You went through a LOT and I hope the meds continue to help and keep things under control. Do take care.

Jean

Hey Kimmy
I know only to well the "all alone" feeling this terrible condition can have on you. Sure your family and friends feel horrible and do what ever they can to support you, but only a fellow TNer can really identify and knows exactly what you are going through. For me cold and hot were always triggers. I live in Toronto Canada and I can't avoid the cold weather. I used to bundle up my face and try not to breathe through my mouth, but somehow those zaps always penetrated the shield I put around myself. For years I lived on room temperature food. I used to try to hide my soup and coffee in restaurants as I added ice cubes to the hot liquid. I just didn't feel like explaining what and why I was doing it. But we do what we have to do. I'm sorry you are going through this and you have for so long.

Thank you so much!

It's strange for me, I guess, because hot really isn't a pain trigger. Of course, I rarely eat anything really hot (or drink). You know, come to think of it, I think I subconsciously keep everything within certain temperatures, and made it so over time. wow.

I swallow ANY drink quickly...there's never a "savoring" or "swishing". I don't risk it. That's another thing I think I just developed without realizing those many years ago.

I can only sleep on my left side. The dr. thinks I'm developing a type of neuralgia over there now (left shoulder and upper arm). It doesn't bother me enough to worry about yet, though.

I've caused the gum under my two front teeth to recede due to the constant rubbing because of the burning, itching, searing there.

These are things that just happen over a span of 22 years.

I'm sure there are so many things that I just do out of habit now that I don't even pay attention to and am just now thinking about...

A hug? Never can I hug someone wherein my right cheek will touch the other person. I can't ever judge another's actions or how hard they might hug....

No showers. I can let that type of action near the right side of my face.

Talking of misunderstandings...once a dr. looked at a scar from a childhood cat bite (barely noticable) on my face and thought it was the scar of my surgeries...oh my. The ER visits... They just had no clue. First suggestion...abcess. Nope, I explain the surgeries. Oh, well, then I MUST have another cyst. Go back to the ENT. Even the ENT's for a while sent to me dentists because there must be an abcess. They would pull the teeth though none showed up. Ugh. It makes me angry to think of all of this.

One thing I've noticed that does help me at times. I seem to have found a pressure point (next to my nose - right between cheekbone and nostril, though closer to start of cheekbone) that will give me relief when first pressing. It's only helpful for a moment and the pain seems to "adjust" to the pressure and do its thing.

The thing that hurts me the most at this point? Guarding myself from the unpredictability of my little man's hugs. A child shouldn't have someone hugging and pulling back/turning away/bracing at the same time.

Yes, when I take the time to think of this aspect of my TN, I realize that there's many habitual actions, as well as reactions, present that I developed a long time ago and carry out without thought...

It's amazing what I can see now when I can actually talk about it. It's cleansing/releasing...WOW. And you really UNDERSTAND. I've never had anyone to understand. Years ago, family was frustrated and fed up with me...drs as well. I learned a LONG time ago to stuff it...literally. It's pretty wild to think that I don't have to now...kinda scary almost.

Thank you for being here...more than you know.

KD

PS - I've attached a photo of the little man who's hugs I live for. He's my three (almost four) yr old nephew that's been with me two years now. I'm "mom". He's my world.

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Dear Ella:

I too add ice to hot coffee in restaurants. Another trick with hot soup is to add bits of bread to the soup and stir them in - this cools it off, even though the manners advisers would consider this a no no. Who cares - it works for me. I don't care what observers might think. I don't even watch to see! I just do it. My husband likes his coffee very hot and there I am adding ice.

I like my food room temperature, too and don't "savor" liquids but get them down right away. We do learn to adapt.

Shirley H.

There's the reason why a forum like this is a godsend - after feeling like you must be the only person with such weird quirks you suddenly realize that it's all happening to others. Ice in a hot drink? Yes, indeed, and bless the restaurants who actually give you ice water. How about coffee through a straw? Just try to find a straw that doesn't immediately do an unwinding trick when the hot liquid hits it! And heat - sun - well, all the stuff I read at first talked about cold and cold wind and of course that's terrible but I felt way out of it because the sun and sweating and heat (and I'm a gardener and am outside at all times) were such problems for me. Ha! I'm not alone! Food triggers? We had quite a list at one point of foods that were troublesome for one or more of us, and I had this wonderful 10 course meal planned - starting with BobS and his melted chocolate ice cream soup. I had to adjust to eating hamburger instead of steak, but what I did was buy myself a meat grinder (no electricity so it was an old fashioned crank style) and grind my steak. Then I found I could grind other things too, and between grinding and soup and meals that cook for ages and get all sort of soft and yummy, things were ok. What do I miss? Crusty bread. I always baked my own bread, great French loaves, and I can't eat them. Or most crackers, or melba toast, or bagels (cream cheese and lox on rice is just NOT ok). I miss grapefruit a whole lot, every winter I raced to the postoffice to get the boxes of grapefruit and was cutting into one before I got in my front door! But life goes on, and to my delight I have no problem with hot peppers or garlic and that keeps the world going around.

Bring us your strange problems and I'll bet you find someone here who says, "Oh, yeah, you too?" Now I think I'll go have my coffee - with a lot of milk! Nancy

WOW! More "I can relate"? I don't know if I can stand it!

Yes to foods...no steak for me, nothing that's hard to eat. It's one reason I don't eat appropriately. Anything really sour/tart/bitter can set me off as well (you know that certain something that can "draw" the mouth even to smell - like a pickle). Taffy, gums, caramels...of course those are out. Having TN has messed with my health in the realm that I don't eat properly and my stomach/digestion is a mess too now. Basically, I don't like to eat because of the TN.

I eat alot of breads (crave carbs)...especially hot pretzels (but of course they're not really hot...lol).

I can't say it enough...I'M SO GLAD Y'ALL ARE HERE!

KD