Saturday, May 8, 2010

More coping tips

Here are some of the many ways I've adapted - I don't even think about these that much anymore, they've just become a part of daily life. A lot of this will help those with BMS (burning mouth syndrome) as well.

I use an extra soft baby toothbrush instead of a regular adult version.
I use Biotene dry mouth toothpaste, just about the mildest paste you can use.
I rinse with Biotene dry mouth rinse after most meals; just feels good to remove remnants of food and "neutralize" the mouth again.
I constantly keep room temp water with me - in the car, on the night stand, in my briefcase - everywhere.
For some reason, weak tea often irritates my tongue less than just plain water.

Stick with soft, bland foods, and focus on protein; you'll need it to keep your strength when you don't feel like eating much.
Best bets: oatmeal, eggs, cream of wheat, chicken, turkey burgers, baked beans, mashed potatoes, macaroni & cheese, soft breads like croissants, fruits, cottage cheese, overcooked veggies (soft enough to eat). I can eat Jello gelatin, but for some reason the pudding stings.

FOODS TO AVOID: chocolate, coffee, frozen drinks, fizzy soda pop, garlic, peppers, ice cream, bacon (too chewy- hurts my teeth), OJ, tomato sauce and spicy, salty, fried, or crunchy anything. Yogurt and smoothies bother me too. If you are a big Doritos or Fritos person, sorry Charlie, those are out (I'm not, but pita chips are a favorite - not good).

There are days I know I just have to push through this and say, the heck with it, I'm gonna eat a damn salad, even if I do have to cut it up in tiny little baby bites, and it takes me twice as long as everyone else at the table. I can tolerate Ranch dressing but balsamic vinegar is a killer for the tongue.

Most days, the best I can manage might be chicken noodle soup and mac 'n cheese. Some days my teeth hurt more, some days it's my throat, sometimes it's the tongue burning - the jaw, the head, the ear, etc.... As these change, the foods I can tolerate change too, depending.

What I have to remind myself of is that, as uncomfortable as I am now, I went through about 12 weeks when I couldn't even wash my hair or face without it hurting - this made for many, um, interesting looks. Applying makeup over the cheek area was impossible but it didn't matter, I wasn't going to wear any; I had no social life anyway; my ears and head couldn't stand any noise, couldn't drink alcohol due to the meds, couldn't talk without pain, and couldn't raise my voice above the noise in a restaurant. I still can't go to Costco - I don't know what it is about that florescent lighting and warehouse feeling, but it just makes my head feel like it's going to explode the minute I walk in.

It was too painful to pull my hair back in a ponytail for three solid months, but I can do it now if it's a loose ponytail. I love live music but that's out... just think how much money I'm saving on rock concerts.

These tiny accomplishments like being able to wash my hair again are easy to forget, and important to remember, when you're on the 118th day of pain, and it seems like you're getting nowhere.


  1. Hi Jane,

    March 17. A crown had come off during a routine cleaning, the porcelain had developed a hole & the hygienist's flossing popped it off. This was at my periodontist; I went to see my regular dentist to have a new crown made. I caught sight of the syringe right before he gave me the shot--I thought, "damn, what a big-a** needle!" and when he stuck me, I had an very painful electrical shock that went all over the right side of my face. He had to give me another shot because that one--well, as I now know, its load didn't go where it should have.

    I waited all the rest of the day for the feeling to come back in my tongue; went to bed wondering WTF? Woke up--& the feeling was still not back. Called them. Did I want to see the dentist? What could he do, I asked? Well, nothing, I was told. Then no, I said.
    Started looking online for information on this--thing--that has eaten my life.

    Mine is nowhere near as bad as yours--and you have my complete empathy. All my effects are confined to the right side of my tongue and the tip. I experience the burning, mainly, punctuated by occasional sharp pricks, jabs, stabs. The worst thing is trying to sleep--the burning keeps me awake. Last night I even massaged Lidocaine on the area and that helped numb it out enough to get to sleep. Once asleep, I'm pretty ok. I had put off trying the Lidocaine because it makes me gag, but I was desperate & for some reason the gagging didn't kick in. I didn't even taste it (whew!).

    I don't have anything like you do--I can only imagine the suffering you've undergone. I read online that it can take 6 months--and I latched onto that, refused to look into a future of unremitting burning like this. But--until I read your post--I thought it would continually keep getting better, slowly, & could not understand why one day would be almost not awful, and the next come one with needles & pins. Thank you for explaining that.

    I have taken Clonepin every night for some time to sleep, before the big-a** needle & now; have not noticed any help there. The Lidocaine last night helped enough to help me get to sleep. I had an injection of B vitamins & that seemed to help--I may go back to that, since B6 is a specific for repairing nerve damage.

    The important thing, as you wrote, is to keep it in perspective. Early on (& still now), I would think, OK, I haven't had a stroke on the right side of my body; it's not cancer of the tongue; I still have half a tongue to taste with; there are literally millions of people who would eagerly trade their physical situations for this. But it gets so g*d***ed old!

    I'm going to try the pain chart you recommend; that sounds like a useful tool! I'm glad I found your blog--if for only the information that the pain and symptoms do change & shift from day to day, hour to hour, that's reassuring. Thanks so much!

    Judith Hawkins-Tillirson

  2. Hi Jane I thought I should let you know that I can eat nacho chips again. I do remember when they tasted like I was eating broken beer bottles. Judith, feel free to check out my blog. I'm not making as many entries as I used to but I think it could be useful for you.

  3. Judith - Welcome and thank you, you make so many great points. I'm interested in hearing about your crown situation - since I have been told I need to have two of them installed over my recent root canal work. I'm very nervous about having anything at all done on the left side of my mouth right now, to further upset the nerve so have been postponing the work again and again and....

    I'm hoping to find a dentist who doesn't mind using gas vs. injection but so far have not had luck finding one.

  4. Kev - woohoo nachos! Funny that we get excited about such a little thing others take for granted! Awesome. Gives me hope.

  5. jane,

    i almost cried reading this post; not an easy feat for someone to accomplish on me. i remember not being able to do simple things like wear my hair in a ponytail, and being so angry at the indecency of it. at times, when it gets really cold out, i will get a rug burn sensation above my upper lip and around my nose, places where the chemical obviously burned my nerve more so than in other places. it is frustrating at times and i dont know if it will ever go away. if i rub this area on my own it will feel like a light rug burn. there are things i have had to give up which i also enjoy, like sitting outside in the cold air, cold wind of any kind, and being physically healthy because i have to take drugs.

    reading your post gives me hope for healing, for you and for me . i told kev about my experience with vitamin C; i will tell you now here.

    i took vitamin C in powdered form in water and drank it over the day. i took about 5000 mg a day and it helped me more than any drug i have taken. you can read about megadosing with vitamin c online. it cut my pain in half and then some. some days i am even pain free. i am not a doctor, but if i was, i would tell every patient i had with a nerve injury to try it, it's natural and there is nothing to lose. i also take 1000mg of vitamin E, as i have read new research with shows coupled with vitamin c it can relieve neuropathic pain. whatever works.

    i never solicit anything to anyone, but i had a good experience with something and want to pay it forward. it may or may not work. you never know.


  6. K- - I remember that too - not being able to stand the wind. Luckily I'm in the south and it's not too cold here. I used to wear a "hoodie" so I could pull the hood over my left ear, and a scarf to keep wind off the left side of my face. I looked pretty silly and avoided going out of doors a lot back in the wintertime.
    I am going to take your suggestion of more vit. C, do you use those Emergen-C packets?

  7. emergen c is only 1 gram per packet. i was taking 5 to 6 grams a day in divided doses. i buy a jar at the vitamin shoppe for about ten dollars and it comes in a boatload. cheaper that way.