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