Out of interest how many of us have pain in all 3 branches of the nerve? I can experience shots of pain and burning aches in any of the 3.
I have a burning, crushing, stabbing in all three.
Hi Sue. Yes me too. The pain really whizzes around sometimes or can focus is just lower two or just the eye for days at a time. Im awake tonight with the pain Ive now taken an awful lot of meds to stop the attacks and they seem to have slowed a little but my mouth is swollen and ulcerated inside. I am gasping with the stabbing pains to my lower face. So horrible. x
I have constant burning/stabbing in Branch 2 but when I have the electric shock attacks I get them in all 3.
Helen, yes I have tn2 and tn1 in all three branches I know it's AWFUL! I have pain almost constant especially since this past Jan.Sending you soft hugs. Dawn
Oh dawn. Doctors just don’t get it. I had an emergency appointment this morning I was so desperate after Tn 1 shocks woke me and continued till children got up. My face is puffy and sore my ear still aches and I’ve hot some small after shocks. . I’m searching for a second opinion as first neuro suggested I had ATN. X
All 3 branches on left side. TN1&2
Only 2 on right side.TN1
Mimi, went to my neurologist last fri.I told him about the same pain I have been having on the left side for the last six months only when the pain is real bad on the right I am sure you can guess what he said, more nerve damage. I just thought it was a fluke, I still want to think that at least untill I seeDr. Casey on Nov. 8th. Wishing you a painless day. Soft Hugs, Dawn
I have had pain in all three branches on both sides of my face in eyes, in nose and cheeks, and ofcoarse in my teeth all over the back of my head.. So yah pretty much everywhere in my head Thankfully the meds im on now have stopped a lot of this.
jstagrl29, your pain sounds so much like mine. Would you mind sharing what meds you are on? Sure hope you continue getting better! Wishing you a great painfreeday and many, many more. HUGS,dawn
I have pain in all 3 branches along with Anesthesia dolorosa. My neurologist added Elavil to take before I go to bed. It has helped. I still experience a lot of pain daily but am tolerating better. I have had 3 major breakthroughs of constant attacks in my ear since I started the meds which is a lot better. I hope this continues.
Hm how come so many doctors disagree about where the pain comes from? Another question....How many of us have been under significant stress prior to onset? I was in an unhappy marriage for 10 years and held it in till the day I left almost. I know I hold a lot of my stress in my face, jaw clenching. I wonder if this has created some nerve damage? Maybe this is why I get pain Atypically. Can anyone else associate with this?
Dawn after trying 2 kinds of anti sez. meds that seemed to have a adverse reaction for me I got nortriptyline a tricylic anti depress. which is what im on now at 75 mg a day it takes weeks to work up to that amount and work into the system but I don't know what I would do without it. I hope u find pain relief soon my friend.
Dawn Monarch said:
jstagrl29, your pain sounds so much like mine. Would you mind sharing what meds you are on? Sure hope you continue getting better! Wishing you a great painfreeday and many, many more. HUGS,dawn
Helen I too was under extreme stress I worked for 10 yrs straight without vacations to keep up with a house payment that was outrageous I bought the house before the market crashed. So after the pain started I had to quit my job and move back in with my parents. So yah stress def plays a part in here some where. I feel we the patients are going to have to figure out the answer for this disease since no doctor seems to have a grasp of how painful this is or even care for that matter.
Helen said:
Hm how come so many doctors disagree about where the pain comes from? Another question....How many of us have been under significant stress prior to onset? I was in an unhappy marriage for 10 years and held it in till the day I left almost. I know I hold a lot of my stress in my face, jaw clenching. I wonder if this has created some nerve damage? Maybe this is why I get pain Atypically. Can anyone else associate with this?
I have a large variety of pain in all 3 branches on the left side and on the 2nd branch on the right side. While stress seems to be a major factor in the pain levels...I had very high stress jobs, now I am not working and the pain is very severe and is there 24/7. Now, the pain causes stress, seems like a vicious circle.
Jstagrl,thank - you for your reply. The more I read about your pain it sounds OH so much like mine.I am sooo sorry! This is sooo TERRIBLE! I am on 200mgs a day of lyrics it didn't take but 2 weeks and it has helped the pain and terrible pressure tremendously. But nothing else I am also on 600mgs. a day of triliptal ( not sure of spelling) for bad anxiety I recently started 150 mgs. of trazadone ( spelling again not sure) it seems to be helping the anxiety some. NOTHING helps me sleep. I sure wish something would my body just feels like it wants to quit! This pain being so constant for so long is just hard for me to deal with here lately. I know you know! So many no it is just so sad we have to deal with this it just makes no since.Sorry I know I shouldn't go there. Wishing you painfree moments, hours, days, and years. Soft hugs to you and thank - you again! Dawn
Ive had anxiety.disorder all my life and the nortriptyline also helps with that! So its kinda a 2 for 1 deal i say if at all possible try talking to ur doctor about switching
We r all different I guess. If this was a straight forward illness I guess it wouldn’t be so hard to treat. I’ve had a realively pain free day so that’s a bonus!!!
I have the burning, crushing pain in all 3. stabbing horrible pain in branches 2 & 3. so horrible :(.
Mine eased yesterday. When it goes I sometimes wonder if if imagined it. Lately when it goes I’m just left with this terrible low. Awful how emotionally devestating this has become.