What if one just has to manage?

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21

(cont. from below) was when they put my childhood pic up next to his. I wish they all did have to try on a mask and feel this pain, if only for a day. Whenever I think of the dissolution, except for with my Mother-In-Law, who misses her girls, she says. I try not to look back much at 21 yrs. of memories. I was practically their daughter! They are tired of my illness! Well SO AM I!!!!!

I wish your ex was the stand-up guy that you deserve! You deserve the best of things. His attitude sounds unconscionable. ! People just change, or are hiding their true selves for years sometimes, and I don't know why.

Hang in there, Tracy. This person doesn't deserve to dominate your thoughts, they are meant for higher things, I can see.

Sincerely and with hugs,

Stef

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Have you asked about PNS? it is used for atypical, bi lat, ad , t.n. and o.n. . it is a last resort. I myself agree there is no CURE. only times some have remission and times more often where we have to manage the pain as best we can… but a cure making it gone for good for ever.I dont think there is such a thing.

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James,

It sounds to me as if you have developed what I like to refer to as "excellent coping skills", or yes, perhaps, as you say, your pain threshold is perhaps higher than mine. I keep hoping in research, myself. I am glad that you have some "almost" pain free days. I am still fighting. I have a full life waiting for me. I just need to find the right alternative treatment. At least, I know a maintenance med which brings me back to "pain free". At this stage in my life, I need to find a doc who will help. I will cope with it's side effects. I am missing out on too much.

Tina, what does PNS stand for. I'm guessing the last two words are "Neuro" and "Stimulatoro". Yes, I believe you are right. There is no known "cure" for ATN, right now. I have never had periods of "remission", but I do have days which are better than others.

Thanks for replying, both of you!

Take care, friends!

Stef

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Stef Yes I was told from my Nerologist that in aboute 13 year’s I almost put tears in stead of year’s. They might some up with some thing for chronic pain. Well Im 54Guess that will make me 67. He also told me there is no cure. I left his office set In my car and just cried till I could get my strength to start my car and drive off.I already faced having to live in chronic pain once before . Neck pain shoulder and chronic tail bone pain. But nothing to me that ever compaired to this ATN. These other’s were all injury’s. How do I deal with something That I have no reasone why It started or where it came from and no cure. Guess that sum’s It all up. No straight forward answer’s for it. This pain woke me up from dead sleep chronic pain in to my night mear. What Im saying is this pain woke me up. I was trying to deal with chronic pain. Now im tring to reach to suvive.Where’s the Laughter this lady once had and joy for life and people. Im trying to reach as hardest I can. When Im alone those tear’s just roll down my face, Cant even do that right It’s to pain ful. I pray to god You said you would not give us more then what we can handle. Well this is more then what I can handle so I ask for strength. Thank’s Shirely

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Yes Neuro Stimulator

I try to help as much as I can and know lots of others who have either the PNS or DBS (Deep Brain Stim... motor cortex stim). please let me know if I can help or if you need a contact or just wanna talk. I am a few typed words away ANYTIME for ANYTHING.

There is hope There is quality of life left. And sure you have to learn how to do certain things different or even not do something at all but you trade it out for something else. the hardest thing is accepting it all. Like for me I cant kiss with lips so now it is nose kisses or air blown kisses. eat with plastic rather then metal silerwear. Use a straw, cover face in cold or breezy, dont stay outside for long..stuff like that. at first it can seem like the quality of life is gone but really it is just different changed not worse then before just a different way then before. ya get what I mean to say??

The hardest part for me was facing it, and getting past how I was angry with myself at my body for betraying me . now that I have gotten my pain managed better then I ever have before . Since implant of the PNS , I am pretty okay. Reiki is AWESOME !!!!!!!!!! My good friend in town does it and I go for sessions every couple weeks.

I think I will message you. if you dont mind.

Sending positive healing energy.

PEACE

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well scratch that message to you, cant go threw so will get info to ya another way :

27

Shirley and Gloria,

Oh, yes! This disorder makes one mad, and sad. Sometimes, I am even happy because I am not hurting.

I do know on thing, though, I am tired of the Mickey Mouse way that most physicians try to treat it! ATN responds best to medication, is what I am finding out from my researching. I cannot say that I have had any surgery yet, but I am sort of glad. I hear so many horror stories of how many of the conventional treatment for TN only make ATN symptoms worse. For ATN sufferers, I have yet to talk to anyone, and I've spoken with hundreds of patients over the years, who has been helped much by MVD, or any other surgery.

With that being said, the reason why there are a lot of people feeling the way that Shirley did today, or like I have before, I believe, is because the pain of ATN patients, in this country at least, I am fairly safe in saying is POORLY MANAGED by our healthcare industry.

Tina, it is amazing at how much I have learned from listening to the experiences of others since this original post in January. I will have to admit that I am a little afraid of the treatments you mention. I believe they involve some sort of implant? I would try that if I had exhausted absolutely ALL medication options, and none worked.

The bright spot for me. I am not sure if this is the case for you, Shirley, but I have found a medication which makes me virtually asymptomatic. The trouble is that doctors in my area do not like to prescribe it for Chronic Pain sufferers in my area. Gloria, I know your story. There are meds which help, but like most ATN patients, you are under-treated.

Take heart, though, ladies. I've noticed more literature out there regarding the proper treatment of ATN than there were when I was first diagnosed. I'm going armed with it to my Pain Clinic. Not that I have much faith in my Nurse Practitioner anymore, but I do in my old one. She changed practices. I am fighting to get a GP to refer me to the clinic she went to. There are actually SOME compassionate docs out there, and Shirley, my kindred spirit, I will pray with all that I've got that you find one soon and some REAL medicine for your REAL pain!

My time is usually short due to having children, so as usual, I apologize for type-os. You all know what I mean!

I've feel that many of you are now like extended family. I believe this site alone can make a splash.

We may not be operable, but we are human beings with feelings, and veterinarians seem more compassionate than some of the docs I've dealt with regarding this issue. Besides, with the correct treatment, many of us, like myself, could return to work.

Anyone who is reading this, a way you can help, is click on Scott Orn's blog, click on the link to the Youtube video about this site and spread, spread, spread awareness until we make it known to the whole Healthcare Profession that WE AND OUR PAIN WILL NOT BE IGNORED!

Let's roll!!!!!!

Stef

P.S. Shirley, you are a brave and compassionate woman. You and Gloria are two of my own personal heroes and kindred spirits. Tina, we are glad to have you! I would like to make you feel welcome. Your input is much appreciated. As a result of your post, I will be doing further reading on the subject you brought up!

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Thank you Gloria and Stef gloria I thank you for listening and caring. that goe’s a long way that people care and I Thank you. Shirely Stef I’'ve had the implant the in plant in my lower spine before Had mixed feeling’s aboute this mine was year’s back Im sure they have improved and updatedI did not have face pain then. Ihad ten’s unit One that was apain suppresor for pain and migrane. And a inplant in lower spine . Would have to learn more aboute the new one does it help facial pain for ATN or back and neck pain Dont lknow nothing aboute this one.

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the only way to be approved for PNS is to have exhausted every other option medication and most usually after also having other surgery such as gamma or mvds. If you find a med or combo that works dont stop and waste time researching PNS yet… keep rolling in the direction you are…
May you find at least a few compassionate caring knowledgeable doctors and professionals that listen to and help you regain a strong foot hold over the ATN and also your daily living in the very near future.
PEACE

30

Thanks, and by the way, Tina, for weighing in regarding Reiki!

About Reiki, yes, it works as well as a good Chiropractor did for my pain. The Chiro did not provide relief that lasted for very long periods of time for me, but it did help. I'm suspecting that it is because there may be a link between my Scoliosis of the Cervical Spine, which my Chiro was the first to diagnose (but I knew it before I got there, as it the big lump on one side of my neck, the sway of my neck and the bulging disc resulting from it, is palpable). It was confirmed by an MRI, which was ordered to, "rule out TMJ", by my PM
Specialist.

Back to Reiki, Tina. I get this from my fiance, who's sister has studied the art, but if I had the money, I would go for sessions, undoubtedly, regularly and religiously. I am speculative of how it works, but it DOES! I am typically very skeptical of anything which is not supposed to help ATN, in any other form than medication, because pain meds and anti-convulsants are the only relief I have ever found from the hellish disorder. It is not a substitute for my medication, because my condition is too far advanced, but it certainly does me good. I would recommend it to anyone with the means. I'm wondering how costly the sessions are. You are the only person I have spoken to, on the site, who utilizes Reiki, as a part of their pain management regimen.

It certainly sounds as if your journey with chronic pain has been tough.

I would love to hear from you any time, as well.

Sending peace and positive, healing energy back at you!

Stef

31

I ran across this old blog of mine. Well, I was hurting daily then. A new pain clinic and new regimen has given me some form of life back. Yay!

I was not given Methadone, though, but Morphine. Well, for now, it works, but with more side-effects than anything I've EVER tried. But, I am posting this reply to my own desperate blog out of mere thankfulness, that SOMETHING gives me pain free hours.

I still tell my fiance I need Reiki. It just gives me an excuse to cuddle intensely! That always helps a little too, rare chronic pain disease, or not!

Love to all who cared enough to respond to this one!

Wishing informed and compassionate care to all,

Stef