It has become increasingly difficult for me, as I am watching my life narrowing due to my worsening TN. I have run out of options where medicine, and surgery are concerned, and I am trying my best to deal with the hand I have been given. Oregon Health Plan refuses to pay for the nerve stimulator that could help, and while that pisses me off, I try not to focus on it. I also try to keep my ass off the pity pot, but right now I am struggling with that one. I see where people are in life, and death battles due to cancer, and I think Sarah shut you pie hole, you could have it a hell of a lot worse. I have now hit the 22 yr mark of dealing with this disease, and am now in relapse #3. I often hear God will not give us more than we can handle. I have started to question this. I am told that when these times hit, to find the one thing that motivates me to keep going. It always seem to be my boys, but reality is it is the boys, my granddaughter, Malcolm, my mom, and my step dad, my friends. It is my calling to suicide prevention that motivates me to push through times like this. It is also the deep embedded feeling in trying to deal with my pain, I have no right to cause pain to those who love me. As I have been typing I thought of something. I know the doctor that heads the facial pain clinic at OHSU. Dr Stacey is a great doctor, very compassionate, and extremely funny. I am going to ask my primary care doctor to refer me to him, and when I see him, ask that he refer me to the pain psychologist that works in his clinic. While I am feeling rather useless at the moment, just by putting words to the feelings, I am starting to see a small ray of light at the end of the long tunnel.
The steam locomotive in my profile picture, at top speed, could do 110 mph. I love it as a metaphor for barreling through the TN tunnel, one more time.
I hope that you start feeling better soon.
As I read your words I am in relapse #2 and had a neurologist who was only upping the two meds I was on and not looking at any options so I changed neurologists but while on that same pity pot with you I find my kids are the only ones keeping me alive at this point. I am only 2 years in and your at 22, I know there is no cure, but I hope when I am at 22 yrs I am as strong as you are.
I am in my third year yet was only diagnosed a few months ago. I had to fight the whole way for a diagnosis. I only have myself n four daughters. Friends n loved ones dropped like flies when this happened. An oral surgery on my lower left mandibular. I have tn2 n atypical face pain. The worst with no route n the prognosis of it gets worst thru the yrs. I wasn’t treated in the beginning so it is the worst it can be. 51/50’d a cpl mos ago cause the pain never goes away n it is at levels of 17!! All I do all day is look for cures, hold my face n cry on n off. I am single, my kids are basically wanting to get on their own. Child support ends soon, I’m not hireable like this, I won’t find love like this so single it is, n I won’t have n income. So thanks to tn2 I will be homeless n medicated out of my mind n alone in pain. This is the facts unless there is a cure or divine intervention!
It can be very dark. I know well, people dropping like flies, and yes it hurts like hell.
hi! I have to be brief but first I am very sorry for what you are going through. it is very isolating as well.i got a displaced and torn cartilage from a dentist 23 yrs ago-almost no help for anything-the drugs and slint were useless to harmful. it was horrible to have it strike at work-I was a nurse for 31 yrs-and bad spells could last hrs-days-weeks with smaller events between. I have had no surgeries nor seen an md for it since
early 2000s-and she was very insulting -so then,a couple yrs ago,i started homeopathy and am so much better! I take spigelia 200c 6 pellets to dissolve in mouth and often add staphysagria 200c or hypericum perf-if you want more info please leave a comment .I hope things turn around for you soon!
Thanks for the input Erin. I am doing better. I have gone to a naturopath for the pain, and they have prescribed things that have helped some. Since I typed this blog, pain wise, I am doing much better.
hi saraiderin ! I was so glad to hear that you are feeling better! and using natural sources ! you might want to try an experiment with homeopathy-for instance if you ever get bursting throbbing pain try hylands migraine-3 little tabs under the tonque. I did this when I had what felt like mini demolitions running up and down one side of my face for 2 1/2 hrs one day and it stopped instantly! I got downright giddy! the next day I had another bout-same great results! I get the migraine med from swansons for $5.00 and same for shipping-I also get spigelia from 1 800 homeopathy-was getting the 200c pellets 640 pellets for $26.00 but have just downsized to to 30x tablets for $9.95 due to money and the lack thereof! seems to work pretty well-I am interested in trying some other things including hemp oil(swanson). one problem I have is that my problem is structural damage of the jaw and it can shift and be a gamechanger for the pain level...don't know what to do about that...I keep boiron sinusalia on hand-any sinus problems can cause an uptick in pain. yesterday I was reading some homeopathic writings from a while ago and I can see why people might look askance at this but it works for my husband,our rabbit, and myself. I hope you keep getting better and better! ! was delighted to receive your note! God bless you!