Cangirl, we’re wondering how you are doing. Please drop by and say hello.
Seenie from ModSupport
Thanks for that info.I have found this site to be the best thing that has happened to me.No where else was I getting info.And because the pain is so bizarre no one else gets it.And the doctors!!!
I swear-I had a neurologist write on a report that I did not have any gum pain and diagnosed me as having something else.No tests.just sit and talk.Where the prosthedontist refused to make dentures because if anything touches the gum I curl up in a fetal ball.
I really hope the lady from BC is OK.
Hello cangirl. I do hope I typed your name correctly. After reading your post I felt so sad with you. It’s very hard to share what our feeling are and you have done awesome. Mod support has sent messages to you checking to find out how you are feeling and for your safety. ALL of your friends here in this safe place send support and love to you. Please let us know your situation.
I feel for you because I am going through unbelievable pain which is getting worse. I did see a pain management doctor who put me on morphine, oxycodone, OxyContin (not all of them at the same time). That did very little for nerve pain in my lower jaw which feels like a razor blade is being sliced through my lower gum line. I have no family left and my only son age 24 moved to San Diego. I live near Chicago, IL. I am 65 and I feel the same way about having no support. I am living on my own and all of my friends are either so far away, or they are dead. All I can think of is how can I keep going on like this. I have to give my cat away because I do not have the strength to take care of him. It is difficult to eat, talk, or even get out of bed. I wish blessings upon you and I did try Botox injections in my lower jaw which made it harder to speak. I hope that you have some faith that each day there are new therapies that may one day help you. More blessings, Barbiedollstars
I am so sorry that you are in constant pain. Pain is a difficult companion and can make us think thoughts which we would normally not. I think legally you/we would not meet the criteria for the right to die. You do raise an interesting question though of if quality of life should be a primary consideration when considering a person’s right to die request. I hope you find relief and hope by sharing your burden with us. I truly do understand your plight. Hugs, you are not alone.
Oh No-sometimes pets give us the reason to live.
I hope you can find a way to keep your cat.There must be a seniors caring group near you that can help.
If I lived anywhere near you I would help.
Hugs
Thank you for the hug and I realize I am not alone, however I haven’t been on computer as I am getting very ill. I had to stop taking Lisinopril for high blood pressure due too pain and stress. My lips swelled twice their size last July and October. The third time I went to 2 doctors and found I have an antibody in bloodstream working against my thyroid (autoimmune disorder). My lips now feel like they have been burned and the pain is constant. I searched reasons for burning lips and found it could be part of ATN. My son moved to San Diego and came back to only take my cat. I can barely get out of bed and cannot take ibuprofin either as the dr. said to stay off Lisinopril and ibuprofin. I am being treated with prednisone and I will not take morphine as it makes me sick and does little for nerve damage. I don’t know how much more of this I can take. I do not see any future and I have lost all hope as the pain is excruciating day in and day out. It is difficult to eat, talk and now I have nerve damage in both feet. I had drop foot and keep falling. I don’t want to end up in a hospital. I just don’t know where to turn anymore. Blessings, barbiedollstar
Hi Barbiedollstars
I am so,so,sad that this is what has happened.Your son is probably overwhelmed.Let’s give him the benefit of the doubt.
You seem to have tried all the meds.Have you tried the tricyclics? Clonazepam can work for burning mouth.Read Dr.Grushka web site if you can.She uses very high doses.Maybe one of your doctors could try this.I have crushed a pill and put it in oil to rub on my burning.Is there a trigeminal neuralgia group in your area.And home nursing through a community group.You are a senior now.There should be some benefits.
Thank you for letting us know how you are doing.I know my response is probably annoying cause you have probably done all that but my heart is being pulled out of my chest.
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Hello Cangirl,
I am from BC Canada and suffering from severe chronic neuralgia & facial pain so horrific that no pain meds touch and worsened so awfully that I too feel when I can no longer take it, I will plan end of life in Europe if I have to, someplace where at the end of my long, loney journey, I will have one most event in my life painfree. My right to choose with die with dignity and grace. I am only 42. If you live in Canada, call me ‘heather’ and I can send you email if u like.
My story started with surgery to brows Id had hairgrsfting in 2x before. 3rd time in 2015, I suffered pins and needles all over brows, down sides of nose. Then I thot I knew pain. Id take 2015 happily instead. Long story short, saw 5 neirologists, no diagnosos…pain clinics thot scar tissue fm previous surgery was impactng nerves. Had too many nerveblocks (to stop pins &needles), no diagnosis. Been on all seizure meds…didnt help so im on benzo a yr that helps no more cuz nerve is so damaged fm too much needling. Pain is stabbing in eyes and nosebrdge & burning & neurgia and over rt side mainly…so horrific meds that helped barely dent pain. I smoked last yr…lightly. I quit smokng & makes no diff.
Fam & friends dont talk to me cuz Im miserable. Bf I live with ready to toss me out too. He loves me but cant understand & fedup cuz I am not happy. He tried to be there but I cant be happy, I cant cope now.
I will try to get well until one day, a doc says this is it, live with it, no more can be done. I am almost at that point now but not yet.
I want a quality of life too…I WANNA get drunk and chainsmoke w/out consequence as before, then stop smokng again, and to feel nothing but the warm wind on my face, to be able to put on makeup w/out fear again. To be IGNORANT of neuropathic neuralgia pain. Id happily break both arms & legs & suffer that then this never ending revolving door of torture.
If I cant have half a semblance of this gone w/out meds, i want none of it. I would rather choose a dognified death and you should have that right too.
What is worse? To die of a terminal disease, or to be healthy in every other way, sentenced to a life of facial torture that never stops everysecond of your life knowing with our luck, we will live longer than most? Why do we have less rights than a terminal patient??? We shud have those same rights. Contact me. Our stories sound alike…we can comfort one another. Thank you for your tale…I feel already less slighty alone.
Warm regards Can.
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Ps… if I didnt mention to make clear to you, my pain is 2 years chronic every second of my life pain too. Mine never stops, not even when I waken from a good sleep.
Mine too has worsened, I too have nowhere else to go or live, no one sees me or hangs out and Im afraid to go out long to make pain worse. I not only lost my life…I feel deep regret that my life is already lost, just my body is waiting to join my crumpled soul. Reply or dont. Im used to being alone more than ever. Again take care.
What the “H” girlm
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Have you tried seeing an Upper Cervical Chiropractor? It is the only thing that helped me. I was skeptical about Chiros, but glad I went. 90% pain free. Medication was worthless and only made me drowsy and groggy.
So sorry this is late but I have had terrible lip swelling. I was on Clonazepam before I ever had ATN and when I forgot to take med it almost killed me and I ended up in hospital so I am afraid to take it. I went to a dermatologist that told me to use a lip balm that they sold with hydrocortizone and also at night to use “diaper rash” treatment. Nothing so far has worked for me. I read an article and I will find out if I can have a specific MRI.
"Certain imaging techniques such as magnetic resonance imaging (MRI) can be used to assess for or rule out underlying causes of TN including tumors or multiple sclerosis. An MRI uses a magnetic field and radio waves to produce cross-sectional images of particular organs and bodily tissues. However, it is difficult to see a blood vessel pressing against the trigeminal nerve root through a “routine” MRI.
Facial pain experts may order a “targeted” MRI, which usually means using a high resolution MR(3T), with special attention paid to the trigeminal nerve. This test may be performed with or without gadolinium, a contrast agent that is used to enhance the scanning results and supply a more detailed picture of tissues such as the brain or blood vessels. On some MR machines this is called FIESTA sequences. This means that 1 millimeter thin sections are taken, in a coronal plane, without any skips in between images, through the entire course of the trigeminal nerve. This results in a high likelihood of finding the offending vessel. This targeted method often yields an identified cause even in individuals who have been told that they have a normal MRI (routine study)." I thank you for your great kindness Ellen and I can’t always come here as I am in so much pain and so depressed. Blessings, barbiedollstars
I forgot to mention that I found the previously mention MRI was on the NORD site (National Organization for Rare disorders". I thought this might be helpful because nothing was found on a routine MRI I had about eight years ago. More blessings, barbiedollstars
Hi There
Sorry about your pain.
I am trying to figure out what to do with my flooded house.
So depressing.
I just wanted it for 10 more years and now whoosh .
I hope you are in a nice dry place.
With no mold.
If it were not for the weed I would be so angry.
Sorry to hear about that Ellen, TN is enough to deal with, then to have that also. Ugh!
Hi Ziggy
Thanks
I swear.It poured rain 2 days ago and I stayed in the basement removing
floor tiles and my patch work and landscaping worked.But the next
morning-no rain overnite my basement was flooded-gallons.
Gutting the room today.Bashed the light and set off a little fire-fire and
water.And whatever other creepy stuff down there.
Still water coming in and it has been beautiful out for 2 days.
Maybe mold is a cure for TN
I will find out!
Ellen, I am so sorry to hear about the flood which is devastating. I had two in 2016 four weeks apart and it went into my bedroom which is on ground level and basement. I had industrial blowers and did 35 loads of laundry both times. It is sickening, however, there are sprays to kill the mold that do not all contain bleach. As far as pain, my lips feel burned and the inside of my mouth is sloughing off. I am getting my affairs in order and I just want out of here. Blessings, and I hope you feel better. 
Maybe you are like a butterfly ready to take wing.
I really hope things are peaceful for you.
The flooding is over now.Big bucks and total gutting of the basement-but rent in my city is huge and with my son in assisted living it is not really a choice.
My flooding is nothing compared to you.The lead hand of the crew was a Ukranian Orthodox priest,with his own parish.So,I had a priest blessing the water.
Again,wishing you peace,comfort,and a whole slew of angels to watch over you on earth and ,when it is time,to hold your hands and dance with you.
Sorry this is over a year late. I have been too ill to even get on this site, but wanted to thank you for your kindness. Blessings to you, barbiedollstars
Be careful with recommending this. There have been cases of phantom pain and the nerve can grow back. I do realize this has been effective for some but I have also heard some horror stories. I am very glad that it worked for you!