Sunday, October 17, 2010

Roll Call - Please check in and give your status

How are you doing: Judith, Jenny, Dean, and all the anonymous and infrequent contributors to this blog?
Kritty, Kev, Imogina and Pierre; always concerned about how you're coping and what advice you can give.

How are you doing, what are your symptoms at this point, and has anything helped?

Perhaps our little braintrust can help. I really do think, if nothing else, having a place you can vent about it helps release some of the energy and provide peace of mind that you really aren't alone in this struggle.

Be Well, Jane

8 comments:

  1. Hello again Jane,

    I'm just about the same. Nothing so far is really helping. Some days are slightly better and then the next day may be the worst of the worst.

    I am still new to this (about 2 1/2 months) and coping is a challenge. Honestly, some days I'm not sure I can make it to the next day. I'm just hopeing and praying that with each new day I get a little better physically and a little stronger mentally.

    I'm not able to eat many of my usual foods so my diet has also changed. Some changes for the better and some changes not so much. The recent 3 day binge of Russell Stover Chocolate Covered Marshmallow Pumpkins was in the not so much category. :-)

    I have very dry mouth and my sleep has been bothered by that too. I wake up every 2 hrs or so with my tongue stuck, literally stuck to the roof of my mouth and mouthguard. Ugh! I get up, brush my teeth, use the Biotene dry mouth gel and try to go back to sleep.
    I'm sure I'm not getting much of the restorative phase of sleep.

    Everything in my life has changed- My sleep, my personality, my patience, my food, my work, my relationship with my husband, and of course my physical comfort has changed most of all.

    I read blogs and message board about lingual nerve damage and burning mouth syndrome. I read anything and everything about nerve damage, treatments and healing. I'm reading about anxiety and purchased a series of tapes about anxiety, I research medications and nutritional supplements (Google is my middle name), and I pray and meditate often.

    I am still trying to do the normal life things such as cook meals, laundry, grocery shop, work some from home and reassure myself that I will make it through this.

    Thank you for the place to vent and the invitation to do so. You're right, it does help. I'm wishing you good health and complete healing-- Jean W

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  2. Jean-
    I don't envy you what you are feeling at the 2-1/2-month mark. For me, the very worst was months 2-5. I still have burning all day long in month 10; have I just adapted, or is it getting better? Honestly, I think I plateauted at 6 months and I've just gotten used to it.

    You have many good suggestions- keep meditating if that brings you peace. It's important to remove stress from your life, do things that make you happy, although I know how difficult it is to enjoy them when you're in constant pain (been there, still there...but less so).

    Some say the "Mindbody Prescription" by Dr. John Sarno is supposed to help with chronic pain, and I'm considering buying the book. I believe it's based on the fact that, even after you recover physically, mentally your brain still sends pain signals and has to be re-trained. Hmmm. Sounds a little hokey pokey to me, but I'm willing to try anything at this point.

    I still research the topic often, because I'm still in pain. Some say this just reinforces it- thinking about it too much- but I'd rather know everything there is to know, on the off chance I stumble upon some kind of miracle cure out there on the Internet. Several people have successfully had neuromas removed, but I've been told nothing is visible in my MRI and I'm not a candidate for surgery. Blah Blah Blah.

    My tongue does the same sticking thing! (though I don't have a bite guard - I kept asking for one but my Dr. kept saying he didn't think I needed it - [rolled eyes]) I even have indentations on my tongue a little back from the tip where I've been unconsiously pressing against the roof of my mouth.

    In any case, thanks for your update. You are a wonderful writer- thanks for being a contributor- I look forward to your posts!

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  3. hello,

    at 14 months, i still have fluctuating levels of pain. i'm trying to titrate off Topamax because it may be messing with my lymph nodes. at 75mg, i have about a level 2 or 3 pain centered in the back of my jaw behind my last molar. this is an aching pain; same as always since the nerve block. some days i have absolutely no pain. cold air does not seem to bother me anymore, but we have had an unusually warm Autumn. the true test will be Winter!

    am i better than a year ago? in some ways yes, but i'm still medicated. i do know that i had more pain on higher levels of meds, so i guess i am technically better. i could always eat and drink with no problem, i'm fortunate in these areas.

    i've consulted an ortho about my bite, who naturally says this is the cause of my pain, and not any nerve problem. yeah, yeah, yeah. i also need braces for 12 months to close my open bite. he also says he has to adjust the bite manually. the thought of this is very stressful; i don't want anything else which could exacerbate pain.

    so that's my update in a nutshell. i think overall i am functioning much better. i am back working and generally doing all my normal activities.

    i hope you all are doing better too.

    kritty

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  4. Kritty -
    I can understand your apprehension about getting braces. What does he mean also adjust it manually? Did you have bite problems your whole life? Braces as a child?
    (As you know, I've put off getting crowns put over my root canals for 6 months now because I'm just too scared of increasing the pain which would be, quite frankly, beyond my ability to cope.) Lately my left temple is really throbbing again, I guess it's part of that fluctuation you mentioned. Back to the pain meds once/day that I'd managed to reduce to 2x/week throughout month #9.

    Interesting you mention the winter, too - I remember last Feb-April being very difficult - I avoided going outdoors and pulled a hoodie over my left ear and mouth as the cold wind was terribly painful! Haven't yet seen what will happen when the temps decrease down here in FL.

    I'm glad to hear you are living a normal life, short of some mild discomfort. I hope weaning off the Topamax doesn't cause your pain to increase; maybe after 14 mos that's long enough, and you need to take care of your lymph nodes. I'm told to watch out for the kidneys on Lyrica. Everything has a dangerous side effect so everyone, please pay attention to your body, and be forewarned. Unfortunately, we have to accept these side effects in order to reduce pain enough to get on with day to day life. Sciental.net is back online again and when I can, I've been lurking around there...found stories of recovery after many years. Hmmm.

    http://www.sciential.net/dcforum/DCForumID9/55.html
    Let me know your thoughts.

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  5. Hi Jane, I've been off the lingual nerve injury grid as it were for about 2 months. I have gotten over the hump since July and would say that the injury no longer owns me. I have learned to ignore it.

    Once I got my health back in order. I immersed myself in activity, both physical and mental. If the whole body ached from a day of hard work it seemed to help cancel out the tongue pain. Surprise surprise I now seem to have a very high pain thresh hold and can push myself much harder than in the past.

    I've learned a lot about how to calm my mind down and not allow the injury to get me ramped up. I healed after about 14 months so it can happen and I had the worst pain imaginable for the first 7. Please have hope.

    So if I were to give advice I'd say stay away from Sciential, don't keep a pain diary as you will begin to fixate on the pain, and try to find ways to take your mind off the pain if only for a few minutes at a time.

    The fixating on the pain is so important to fight. I've had sports injuries and if I focus on my knee or ankle for a few minutes I can feel stiffness and pain. I'm sure that if I continued to do this for a couple of hours I wouldn't be able to walk without limping.

    The mind is so very powerful and my new working theory is that once the pain or sensation levels off, the mind can learn to tune it out.

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  6. Hi Jane,

    It’s interesting that you mentioned the “Mindbody Prescription” by Dr John Sarno. I had just been looking at that book on Amazon last week after seeing a video segment with John Stossel. He said that Dr Sarno cured him of 20 years of back pain with one lecture. Another long term pain sufferer on the same video was a comedy producer for the Rosie O’Donell show. She had terrible foot pain that cleared up within about a week of attending a lecture by Dr Sarno. After you posted about the book I was even more interested, so I ordered it today.

    You mentioned about some folks saying that too much researching and thinking about the pain may reinforce it. I beleive this may be true. I am working on putting only positive thoughts into my head. For me there is a fine line there about too much researching and not knowing about all my treatment options. On the plus side of researching, had I not researched a lot, I would never have found your blog or Kev’s blog. I needed to know there were others with this situation that were getting better every day and getting on with life.

    I’m sorry to hear that like me you have the dry sticking tongue. My mouth guard does help some. I think the slick feel of the plastic is calming for my tongue as I try to fall asleep. I don't sleep without my mouth guard due to some TMJ problems. I have worn it almost every night for over 5 years. Even with the guard, I still get the scallops on the sides of my tongue from clenching my teeth during the night. I wonder if a hard mouth guard would help you at this point or just be something new in you mouth to bother you? When I was well it took me 3-4 weeks to get used to wearing it. I still don’t like it, but I like the TMJ pain less.

    Thank you for you kind words about my posts. I appreciate your blog and wish you complete healing and peace.
    Jean W

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  7. kev, i could use some of your positive mantra right about now. between this flare up and prince william's engagement, i can't take any more pain!

    kritty

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