Trigeminal Neuralgia SUCKS! Sometimes I get so pissed off. I’m not even a year in, so I still experience weekly bouts of denial. That all of the doctors I’ve seen must be wrong. I must be slowly dying and no one has figured it out yet because the pain is bad and I’m usually so tired.
I used to worry about my garden, how often I could go fishing, and my only health problems were wondering if my sciatica was going to act up again and how long I could be out in the sun before getting sick and overheated. Now who cares about the pain in my ass....from the neck up I feel I’m rotting away. Most of the time there is no warning, no reason. I can function one minute and the next I’m right back in the agony. I’ve already made enough concessions with my TN. No longer does Joe Cocker blare on my car stereo at 7 am, there is no singing, no rolling down both of my windows to feel the fresh air, no more sunshine on my face…it’s the little things I really miss.
Every minute I don’t feel pain hopeful thoughts run through my mind….is it over, am I healed, was it all in my head? Just always to find that I am wrong, it’s not over.
My neurosurgeon adds a med, it takes me a week in the zombie daze to acclimate to it, then I’ll have a week or 2 of feeling pretty good, then it slowly stops working. He wants to talk surgery in June. I figure I have great insurance, a supportive husband so I might as well go for the gold and get the MVD. But…that’s what I thought when I had my teeth prepped for crowns last year and this whole mess started. Decisions…..
I try not to do the poor me thing, or be too negative. It gets old and no one wants to hear it. Hell, I don’t want to hear myself thinking it and I've come to hate answering "how are you". I have a full time job to work, laundry to be folded, dinners to be made, responsibilities to my kids and family so….I’ll do what I do every day….suck it up and get back to living life the best I can. It's just not as good as it used to be. I'm so over it.
I see Dr. Sahni in Richmond. I will certainly ask him about the patches. I've been asking for lidocaine for my ears and throat since it started.The ENT's just shake thier heads no.
Kc Dancer Kc said:
Who is your surgeon?
Have you tried lidocaine face patches?
Read in tab above.... MVD Success stories! it really can get back to normal for many of us! Also put those words in search box.
Crazy Lady, you’re NOT crazy, despite the craziness and ups and downs of TN…I’m sure most of us could tell you that we’re not normally negative, nor do we do the poor me thing…
BUT TN is the hardest thing I’ve ever had to experience in my 42 years of life! Not just the pain, but all the emotional side effects, the losses, the continuous cycles of dealing with the various stages of grief etc…
So VENT away and feel comfortable to have some pity parties here at LwTN, we do it too, and we all understand like no one else possibly could!
I could relate to almost 99% of what you stated above! I hope you find some small measure of comfort knowing it’s not just you.
TN has a mind of it’s own…so yes when you’re feeling well and think things might be better, it can be! HOPE is key to having this condition…after 9 months of bilateral TN in 2002, we started weaning off my med, my TN on both sides went into a lengthy remission!!
8years on the right
10years on the left
Who knows why it did or why it came back, but I share this to give you HOPE! That it’s possible…
I use a lidocaine mixed cream too and it really helps…I also use a heating bag as heat helps a little for me,
Do what you can when you can, take good care of you mentally, emotionally and physically, everything and everyone will adjust with time, including yourself, as long as you’re gentle with YOU and try and take one moment at a time…I know easier said than done!
Positive thoughts being sent from me to you!!!
(( hugs )) Mimi
Oh CrazyLady: I so understand. I have been in a nasty head space lately as well. I have had TN for 2 years and during that time I have often felt like my ‘old’ self was slowly slipping away and being replaced by an in firmed, whiny, middle aged lady. I do like my ‘new’ self and battle daily to remain positive and strong. I would encourage you to find a silver lining in each day. Sometimes this is hard to do but a good attitude makes a huge difference in how well you cope. I have given myself the freedom to have a few bad days but then it is back in the game. Onward and upward! You are not alone on this journey. I can be Vegas for you if you ever need to vent. Hugs
If I had the energy I would invent a portable hug that I would ship all over the world to help all the poor people who just damned well need one! In the meantime, please just close your eyes and imagine. (((((((( hug))))))))
Thank you all for your words of comfort. I know I'm not alone.
I called my neurosurgeon last week, because of the success I read about with the lidocaine patches, the recommendation, and my will to end the pain. I'm not going to get them. His nurse said that since she has been working with him, he has never prescribed them to anyone. So, after calling him twice since my last appointment I did get to take an extra Trileptal. I love this drug. Narcotics do nothing, Trileptal...aahhhh, my hero. Before I was in a zombie daze when upping my meds....now, I can't sleep yet I'm exhausted, the back of my head itches like crazy, and my thoughts race. My heat sensitivity is worse...if that's possible. I tend to hibernate in the summer anyway. No big loss there. So, I see my doc tomorrow and will find out why I can't have the lidocaine. It's not like it's I asked for Fentanyl patches. But, he is a neurosurgeon, who has done over 1,000 surgeries for TN patients and treated them for over 20 years. I am just one TN patient, completely inexperience in TN or effective protocols. Plus, the extra Trileptal did help....for now. I'll take what I can get these days. Yeah Trileptal. : /
the meds sort of helped, they turned down the volume on the attacks but that was about it...and with the side effects, surgery was my best option. have you had an mri, and did it show a compression? ( showing is not that important) mostly the mri rules out tumors and the like.
this disease is so different for everyone. i vote for the mvd ;-]
I too can relate to everything you are saying. This is by far the worst thing to ever happen in my life. I hate this disease and everything it does to us. All of the meds I take have so many side effects I just want to stop taking them but know I can’t. I feel drunk when I take them but what can I do. But Crazy Lady just know that you are not crazy and we are all here for you. Wishing you a pain free day.
I have not come to the point of typing my feelings when I have those melt downs, but you've said what goes on in my head at times. I feel like I lost the fun spontaneous side of me.But God is so good , he brings me back to his word and promises and comforts me, I don't know why he allowed this other than meeting all of you online.
My heart truly goes out to all of you, and now when someone is in pain I truly understand and can love and pray for them.
The frustration of my family not truly being able to grasp what goes on with trigeminal neuralgia is a big thing for me and wondering if the air conditioning is gonna be blasting in a restaurant, store etc.
I did have a detailed MRI a few weeks ago that showed vascular compression on the right and left side. But it didn't show nerve compression. However...I'm still not sure that is my problem. My TN was diagnosed after dental work. No one listened to me for 9 months that it was the root canaled teeth causing me such distress. After 30+ dental visits and 35+ medical visits....One endodontist did listen on Thursday, he called an Oral Surgeon for me and by Friday one tooth was taken out. It was split down the middle under the crown. I didn't ask for the other one to be taken out for fear they would just brush me off like everyone else has. I had no facial pain over the weekend since the removal of the tooth. I still have ear and throat pain. I'm still taking my Trileptal out of fear, but I plan on weaning down soon to confirm my gut feelings. Few and far between are doctors who listen to thier patients.....I'm glad I found 2 to help me. Brain surgery is on the back burner....waaayyyyyyy back now.
Mace said:
the meds sort of helped, they turned down the volume on the attacks but that was about it...and with the side effects, surgery was my best option. have you had an mri, and did it show a compression? ( showing is not that important) mostly the mri rules out tumors and the like.
this disease is so different for everyone. i vote for the mvd ;-]
I was just diagnosed 5 days ago with atypical TN and am already feeling the frustration set in. Everyone on here seems to have had to deal with this BS for quite some time and I am freaking out that I will not be as strong. I am 38, married, mother of 3 with things to do, people to take care of , etc. I can really relate to what you are saying about getting on with life as it should be. I felt a little better over the weekend, and thought, maybe the Tegritol is working, or even better maybe I am all better and this is over. Nope. I guess the pain meds are starting to work. So much for that idea.
It sounds like you have been coping well under the circumstances. I am sure that through all of this you are still an amazing mom and wife and I really hope that you have some relief very soon.
I am so sorry that this is so frustrating for all of us. I had never heard of such a thing until 2 weeks ago when the pain started for me. It is bizarre and random and annoying.
ANYBODY should listen to you and let you try patches…geeez…
All they have to do is call pharmacy… Its not narcotic, its not fair if nobody lets you try it!.. Id mail you one… But guessing that would be against the law… Whats funny…or not funny, is that sooooo many states getting medical marijuana…a damn great plant… But do not ask for lidocaine… Which they use at the DENTIST…GRRRRR
I am so glad you are venting, it is very important to be able to express yourself. Often your frustration goes down a bit after a good catharsis...I have been where you are at and say you will not always feel this way. It will get better as you learn to manage and adapt. I had MVD a year or so and the pain has re established some pathways so I am back on Tegrital. I cant take too much because I wont be able to function. Please consider checking in with a therapist to aid in coping skills and perhaps Lidocain cream...it will help
Kc...I went to my family doctor yesterday and asked for the patches. She said, Anything is worth a try, right? YES! She gets it! So, I have my box.:) I can't wear them at work. Maybe today I could have pulled it off, being Friday the 13th. Though after I got the tooth cut out last Friday that I've been begging for since my dx of TN...my facial pain has decreased. 30+ dental visits and I was told "Oh no....there's nothing wrong with your teeth, it's just Trigeminal Neuralgia"....Well, the tooth was split down the middle under the crown. If I could roll these lidocaine patches up and stick them down my ears, I would be SO happy.
So, now I have questions.....did I have cracked tooth syndrome that can mimic atypical facial pain? Or is it the vascular compression seen on my MRI causing vascular compression syndrome? Ahh...the "practice" of medicine. No straight answers. I guess time will tell. Thanks for your replies, it's nice to have someone to talk to.
CrazyLady said:
I see Dr. Sahni in Richmond. I will certainly ask him about the patches. I've been asking for lidocaine for my ears and throat since it started.The ENT's just shake thier heads no.
Kc Dancer Kc said:
Who is your surgeon?
Have you tried lidocaine face patches?
Read in tab above.... MVD Success stories! it really can get back to normal for many of us! Also put those words in search box.
Hi blessed no matter what. Just wanted to tell you I LOVE YOUR NAME you chose for this site! I’ve been trying to immerse myself in God’s promises for healing and for strength to endure - whichever way He chooses. I did a Bible App search for Scriptures on healing, deliverance, His presence NEVER leaving us or forsaking us, overcoming, His blessings…pages and pages of Scriptures and I’m still writing them down in a folder! I meditate on them every night. Amazing. He’ll either deliver us from our troubles or He’ll give us the strength to withstand them - and to carry us when we can’t stand anymore. Yes, I agree, we are “Blessed No Matter What”!
Blessed no matter what said:
I have not come to the point of typing my feelings when I have those melt downs, but you’ve said what goes on in my head at times. I feel like I lost the fun spontaneous side of me.But God is so good , he brings me back to his word and promises and comforts me, I don’t know why he allowed this other than meeting all of you online.
My heart truly goes out to all of you, and now when someone is in pain I truly understand and can love and pray for them.
The frustration of my family not truly being able to grasp what goes on with trigeminal neuralgia is a big thing for me and wondering if the air conditioning is gonna be blasting in a restaurant, store etc.