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Old 09-17-2007, 09:07 AM #11
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Burntmarshmallow Burntmarshmallow is offline
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My face jaw mouth teeth head eye pain hit me in 1999 after a semi truck plowed into me.
I did not find any website or persons or info about t.n. and facial pain for a good LONG LONG couple years I think end of 2001 or in 2002. right around the time I was running out of meds to try and options for anything of help for this ugly ugly "illness".
when I did find websites and other people It was like there is more I am not alone!! Peoples posts told of some of the things I had felt, had thought or meds I had been on and I wished I had found these sites and peoples posts before then because the feeling of all alone was the worse issolation back durring that time. I couldnt even find anyone who had a broken jaw before to learn what to expect durring being wired up or unwired . 2 times in row for me plates the 2ed time round.
even still 7 years I find few hell I havent found anyone who has come down the road the same way I had. I am not on any meds for facial pain( since 2003 ) I cannot have any surgeries (m.v.d., gamma never blocks... ) so pretty much I am useless for helping anyone for support on that side of it unless they are going to have a plates put in to hold jaw together , a neurostim/p.e.n.s. inplanted for pain or they are really really depressed because those things I have gone threw. I was on many many meds but those years are sooo foggy and head injury cant recall all that much other then being a sad zombie veggie shell of a person.
One thing I do believe is that I am the LUCKIEST .I can talk without moving my jaw or mouth at all . smiling is a diffrent story I have learned to do many things like before only you learn to do them diffrent then before. I am lucky I did not have too long of a road to find help 3 years not bad from start to finish. I am lucky I am not on meds . I am luckiest for my neuro stim. and my family I know someday I may not have this luck my leads may slip or gosh countless things!!!!! and that is why I lurk and try to post things that I hope and pray helps even just a tiny bit. because someday I may need it back ..need info or help or understanding or just to know I am not alone.
you probly should go search down and find a support group I know that we have local chapters around the country in mosts states for t.n. . Jean gave you some exellent sites and info I think a support list can be found at the t.n.a. site i think????. also search groups on yahoo. many people have their own web groups for that day by day support thing or they have a couple folks they have met by posting and have traded emails.
I DO SO WISH I COULD HELP MORE! Dont give up I know for sure you can find daily support coping with this!! I will search threw the items I have and see what I can find that may help.
peace peace
BMW

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Old 09-22-2007, 10:56 AM #12
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Hi Marilyn

You are really lucky within the unlucky group (who has TN like us is unlucky) because you diagnose the disease in the very beginning. I have this since 1992, like what happened to others, i went to dentist, dentist can't diagnose and recommend me to ENT, but i don't have money to see ENT so i just leave it and the pain will come periodically, at first pain remain few months then stopped for few months then pain again, but it getting more and more serious, until 3 years ago, i went to ENT, he did a CT scan and say is Sinus, go operation, and the pain still remain, come and go. until i was in China 2 months ago, the pain came again, can't even sleep, then go for doctor and the recommend me to meet up with a neurologist, and he disgnosed that is TN. I doubt on it and search internet for more info and read that, the pain described in internet for this disease is exactly what i experienced! I go for another neurologist after i back to my home country and now start for medication. She gave me very low dose, as follow:

1. Gabepentine 300mg per day
2. Amitriptyline 12.5mg per day
3. Ultracet 37.5mg per day
4. levetiracetam 500 per day

I wish the expert here can give me some advise whether this dose is too low? I need to go back to China (I work there) soon and will go to see the neurologist again next week, just worry if my pain can't cure this week, when back to China, I have no neurologist to advise me there. Thanks in advance
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Old 11-26-2021, 11:53 PM #13
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Default TN and Pleurisy

I have been diagnosed with TN and pleurisy too. I feel like a rare patient, in that I feel like my TN is caused by salivary gland issues that were caused by radioactive iodine treatment for Thyroid cancer. Unlike others replying to this thread my doctors don't help or support me in the least for my TN. I think they could, but it would take them longer than 15 minutes per visit and to coordinate with an ENT specialist familiar with RAI. in short I feel like I have slipped through the medical cracks. Like burnt marshmallow I have developed my own coping mechanisms. One thing I do is hold that side of my face immobile. You can actually see this in photographs of me. The other strategy I hit on is to go to sleep on my painful side. When the muscles relax I get a rush of spit that's been trapped up there all day. This only happens once I drift off to sleep. When I wake up on my wet hanky, I then sleep on the slightly more comfortable side.

But concerning the pleurisy, I think it really sucks. Apparently I made it act up by getting the Pfizer COVID vaccine booster. Still trying to learn some more coping mechanisms. As usual there is almost nothing medicine can do for it.
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