It’s a perfect autumn day in Maine. My hubby took the dogs for a walk without me and is now visiting his folks. I’m on the couch, meds on board, heating pad on my face, and still in pain. I want to be enjoying the day!!! Everyone is out living their lives, and I’m a pathetic mess.
I'm sorry that you're feeling lonely. Remember that we are here for you.
Do you ever have good days? I hope that tomorrow will be better for you. Sending good thoughts your way.
Hi Jasmine,
Thanks for your kind words. I have a lot of good days, fortunately. I’m just having a string of bad days, and they’re getting me down. My nerve pain is also spreading, changing, and getting worse, so I’m just feeling a little beaten down. I want to talk with my Facebook friends about it, but they wouldn’t understand. And the reality is that if I do talk about it, they’ll either pity me or think I’m a neurotic hypochondriac. So I sit here alone with the heating pad on my ear, feeling exquisitely sorry for myself. And I really want chocolate but don’t feel up to going to the store. Grr!
I wonder why it gets worse and why lots of people have no problems while they are asleep. This is a very strange and frustrating disorder.
My pain has been mostly in my teeth this week. So far it's not excruciating; I don't know what I'll do if it gets worse. I haven't been officially diagnosed (because the neurologist said I'd be in constant, excruciating pain), so he hasn't given me any meds yet.
Does your store have delivery? I say if you need chocolate, make it so! LOL
Hahaha! No delivery, Jasmine. Sadly, I found a box of Cap’n Crunch, which satisfied my sweet tooth. (as if the grapes wouldn’t have). BTW, your neurologist is a moron. What is it with these nerve doctors who know less about. TN than we do?!
It’s easy to feel alone or isolate yourself when your experiencing pain. When that happens to me I try to focus on knowing I will have better days. I also try to remind myself that I’m not dealing with a fatal disease. Not easy but I try to keep myself positive. With the changes your experiencing that it seems to be spreading and getting worse you may need to be seen by your neurologist. Just know you are not alone.
Thanks, Denise. Yeah, I definitely need to keep it in perspective. Compared to most folks with TNT, I’ve got it easy. It’s just hard sometimes. As for the neurologist, I’m kind of between them at the moment, and my primary as said he can’t do anything more for me. I think I need to just suck it up and pay out of pocket to see a new neurologist. 
Ha! My auto correct changed TN to TNT. How appropriate!
I too am very sorry that today has seemed so bleak. It’s the disease. You are not pathetic. I call a day like that a pity party day. You get in bed, find a good movie, and park yourself there. Heating pads always hurt my face. Go to your PC or local Urgent Care and request Lidocaine Pads. A lovely member here told me about them and they work wonders. Put them on the painful areas, take your pain meds get your favorite food that does not require a lot of chewing. Next, tell everyone that you have nothing to give today, nothing. That to breathe in and out is all you can manage. This is the day where you gather up your strength to fight tomorrow or the next day. I recently found a picture that reads, Be the woman that when you wake up in the morning and put your feet on the floor the devil say, oh crap she’s up! I wish I knew why this is happening to us. I stopped asking-that question, it takes up too much energy. I pray that tomorrow is a better day. Hold on. Best wishes for a lightened heart.
I am going to say something very Zen that would make Buddha say "Damn!, I wish I'd said that!!". You are not your TN so therefore you are not pathetic. Your TN on the other hand is. There you go. Not helpful to you one iota but it makes me look really wise. Ha!
You're right about Facebook friends not "getting" your pain. Anyone I've ever tried to explain it too says"Oh. That's no good. Poor you." and then promptly changes the subject. I get so tired of my co workers taking time off for trivial little things while I just soldier on.
I think we all need to give ourselves a big pat on the back for just giving everyday a red hot go!!
Also keep in perspective that your pain is REAL. And it is hard. It’s also not fair. Life isn’t always fair but it is mostly good. Somehow we still move forward.
Recently I was into our local clinic 8 times in under 3 weeks. (I am newly diagnosed. My symptoms started in June but I was not diagnosed until July…it was in August that I was in so often) From this experience and because I have a nursing degree I’ve learned that we need to be proactive with our care. You deserve to be pain free. I also found most of the medical docs (general or family practitioners) I’ve seen didn’t know how to treat me or what to do with my pain. Find a new neurologist and then see another one to get another opinion, until you’re happy with the care you’re getting. You and the quality of your health/days deserve that. Don’t let any doctor put off you feeling well because they don’t understand it. I also learned they will take minimum payments. Get the care you deserve.
I’m certain there are better days ahead!! Keep believing. And I’m looking forward to hearing how great you are feeling!! Hugs.
Jasmine said:
I wonder why it gets worse and why lots of people have no problems while they are asleep. This is a very strange and frustrating disorder.
My pain has been mostly in my teeth this week. So far it's not excruciating; I don't know what I'll do if it gets worse. I haven't been officially diagnosed (because the neurologist said I'd be in constant, excruciating pain), so he hasn't given me any meds yet.
Does your store have delivery? I say if you need chocolate, make it so! LOL
Hi, Beth, well it's Sunday evening and I am reading your post. I feel the exact same way. My grand children are outside laughing and playing, it is a beautiful day here in Texas and what am I doing; sitting here on the computer, so hungry, because my TN pain is in my jaw, and it hurts to eat anything.
I had MVD surgery 4 years ago for TN that was in my cheek area above my right lip. I got to live a normal life for awhile and then a lot of stress came into my life. My sister who was actually like my Mother passed away, very tragically and my brother in law and it spiraled from there. I, really believe I started grinding my teeth at night. I began to awake with a stiff neck and aching jaws, then it happened in my lower jaw, the striking pains. My Dentist told me to where night guards on my teeth and see my neurologist, whom I did and he told me to go back to the neurosurgeon. I have also developed intense vertigo and ear ringing, so I believe there is some connection between teeth grinding are clinching and TN. I felt for you when I read your article because I know how you must be feeling.
Linda
Jasmine, I also think you’re neurologist is “mis-informed”. Constant pain??? Constant pain would make me think it’s not TN. I agree with the “excruciating pain” part but mine and most of what I’ve read has not been about constant pain. It was weeks in a row of pain but not “constant” even if it was several times an hour. There was at least seconds to several minutes in between burning shocks. For me it’s mostly intermittent. I could literally be getting shocked 100 times a day or more, seconds to 30 minutes or more in between burning shocks that was not constant or consistent…I could breathe… Didn’t want life to end, could see the future. This week my pain is in my teeth too. My neurologist added savella to my Neurontin. Feeling pretty good at this moment.
Thank you all for your beautiful, supportive words. I am humbled by your wisdom and empathy.
Hey Beth
Wow how I can relate! I am sitting here in the couch with my heating pad staring out the same old window! My husband left this morning for an all day fishing trip that we used to enjoy together. I miss those days. My pain has been so much worse since the cold air has came to Virginia. I am battling other pains that my doctor thinks may be fibromyalgia so I hurt all the time! the last time I had any type of good day was when I was on an extreme dose of prednisone and then it was only 3 days of relief. I never forgot the short period of relief though.
I'm sorry. I know I'm not helping. I just wanted you to know you are not alone! This is usually such a happy part of year for me. I love the fall when the leaves change and we get a break from the summer heat.
I'm here if you need someone who understands. I think we can all relate.
Love and hugs,
Wendy
Pity Parties are ok. Just try to not stay there too long. Give yourself permission to grieve what this freaking disease steals from you, keep fighting for good care and hang on. Tomorrow may be better or worse. Who knows with TN.
Do not down play your TN. We all handle this differently. I can relate to your feelings. I told my partner I feel like my life is passing me by. As for chocolate, if we were neighbors I would bring you a case. Chocolate is the best cure for what ails you.
Beth said:
Thanks, Denise. Yeah, I definitely need to keep it in perspective. Compared to most folks with TNT, I've got it easy. It's just hard sometimes. As for the neurologist, I'm kind of between them at the moment, and my primary as said he can't do anything more for me. I think I need to just suck it up and pay out of pocket to see a new neurologist. :(
hi beth, i hope today is a better day for you. i am on the couch too. stay strong and remember we are allowed a day of pity party every now and then.
Hi Patty,
I’m back on the couch today, too. I’m actually sleeping a lot today, and I’m not sure why. I’ve noticed that on pain days (as I call them), I can take as much medicine as I normally would, but I’m much, much more sleepy and dizzy. Do you have that experience?
I really need to see a neurologist or neurosurgeon. I’ve been avoiding it since I don’t have insurance. I also had a bad experience with my last neurologist, so I’m a little gun shy.
As for pity parties, mine are averaging about one a week … maybe more. We will get through this, won’t we?
Take care of yourself!
Beth