Chewing hurts me too, I can sympethize. I lost 25 lbs since I got TN 18 months ago; I got down to 106 and my docs got worried. Now I have to drink protein and carb drinks when I’m able to. I’ve got 10 lbs back so far. Losing that much weight is horrible and I really want it back!!!
I did something really stupid last night. I have been in pain since Tuesday and am not getting any relief because I’m slowly starting on a new medication called Lamictal. I’ll work my way up to 3 pills a day but just started 2 a day on Tuesday. So far, it’s having no effect and the pain is wearing me out.
So, last night, before bed when I thought I wouldn’t be able to sleep if I didn’t take something, I took 2 Tegretol (an old prescription left over from 2004). When I initially took Tegretol, it knocked me out and I thought it would do the same last night. Well, instead it made me itch like crazy. My skin crawled and itched and tickled and I found myself scratching for what seemed like hours before I finally drifted off to sleep. Luckily, there was no rash as a result but I’ve learned my lesson about mixing drugs.
Now, I just need to figure out something that will help with this current bout of pain. It won’t let up and I can’t take off from work because I just came back from a week off (where I did little more than rest and was mostly pain free). The neurologist I saw while on vacation prescribed the Lamictal because he said it wouldn’t make me drowsy like the Tegretol and Neurontin did. I’m so glad the weekend is here. But, it makes me wonder whether stress on the job is contributing to my pain level. Even though I look forward to the weekend to rest, I dread it as well because I won’t be able to do much with my kids.
Can anyone relate? I’m starting to feel really down about this.
Hello Karen,
i find stress at work dose flare up my pain,i have been off tegratol for the pain for a long time i have been takeing vitamins and useing my heat pack which works a treat but only if its on my head 24hrs a day lol .i really hope u find somthing to help u out i just take nurofen plus which is in australia only i think helps alot but i eat 13 aday lol .I have found a great job that i have been at for 6months now and belive it or not but my boss has TN so we deal with the pain together ,i wish that the pain u are going thru is over soon try to de stress and relax the pain will be much worse if u stress good luck and good health much love xxx Mina
Karen Brown said:
I did something really stupid last night. I have been in pain since Tuesday and am not getting any relief because I’m slowly starting on a new medication called Lamictal. I’ll work my way up to 3 pills a day but just started 2 a day on Tuesday. So far, it’s having no effect and the pain is wearing me out.
So, last night, before bed when I thought I wouldn’t be able to sleep if I didn’t take something, I took 2 Tegretol (an old prescription left over from 2004). When I initially took Tegretol, it knocked me out and I thought it would do the same last night. Well, instead it made me itch like crazy. My skin crawled and itched and tickled and I found myself scratching for what seemed like hours before I finally drifted off to sleep. Luckily, there was no rash as a result but I’ve learned my lesson about mixing drugs.
Now, I just need to figure out something that will help with this current bout of pain. It won’t let up and I can’t take off from work because I just came back from a week off (where I did little more than rest and was mostly pain free). The neurologist I saw while on vacation prescribed the Lamictal because he said it wouldn’t make me drowsy like the Tegretol and Neurontin did. I’m so glad the weekend is here. But, it makes me wonder whether stress on the job is contributing to my pain level. Even though I look forward to the weekend to rest, I dread it as well because I won’t be able to do much with my kids.
Can anyone relate? I’m starting to feel really down about this.
Thanks Mina, some of this has been helpful to me. -Liz
You are welcome Liz , they help me also i have been pain free for 3months now 
with no meds at all im feeling great .
Mina xx
Liz Day said:
Thanks Mina, some of this has been helpful to me. -Liz
I find stress brings on my face pain. When at work if we start to get busy at our restaurant my face will hurt more. At home I try to watch a movie or I quilt to try to calm myself, which helps most of the time. Something to take my mind off of my face pain. Hope this helps.
tamina stewart said:
Hello Karen,
i find stress at work dose flare up my pain,i have been off tegratol for the pain for a long time i have been takeing vitamins and useing my heat pack which works a treat but only if its on my head 24hrs a day lol .i really hope u find somthing to help u out i just take nurofen plus which is in australia only i think helps alot but i eat 13 aday lol .I have found a great job that i have been at for 6months now and belive it or not but my boss has TN so we deal with the pain together ,i wish that the pain u are going thru is over soon try to de stress and relax the pain will be much worse if u stress good luck and good health much love xxx Mina
Karen Brown said:I did something really stupid last night. I have been in pain since Tuesday and am not getting any relief because I’m slowly starting on a new medication called Lamictal. I’ll work my way up to 3 pills a day but just started 2 a day on Tuesday. So far, it’s having no effect and the pain is wearing me out.
So, last night, before bed when I thought I wouldn’t be able to sleep if I didn’t take something, I took 2 Tegretol (an old prescription left over from 2004). When I initially took Tegretol, it knocked me out and I thought it would do the same last night. Well, instead it made me itch like crazy. My skin crawled and itched and tickled and I found myself scratching for what seemed like hours before I finally drifted off to sleep. Luckily, there was no rash as a result but I’ve learned my lesson about mixing drugs.
Now, I just need to figure out something that will help with this current bout of pain. It won’t let up and I can’t take off from work because I just came back from a week off (where I did little more than rest and was mostly pain free). The neurologist I saw while on vacation prescribed the Lamictal because he said it wouldn’t make me drowsy like the Tegretol and Neurontin did. I’m so glad the weekend is here. But, it makes me wonder whether stress on the job is contributing to my pain level. Even though I look forward to the weekend to rest, I dread it as well because I won’t be able to do much with my kids.
Can anyone relate? I’m starting to feel really down about this.
Thanks! I have tried to have my husband massage the back of my neck and I do think it helps some. I also do the warmth against my face and take a hot shower.
Hello elisa,
yes hot showers are great the steam helps alot i find… im with u on the neck rubs i think it ticks it off lol
anything is worth a try when u are in pain i really hope u get ur pain under control .Mina xxx
elisa c smith said:
Thanks! I have tried to have my husband massage the back of my neck and I do think it helps some. I also do the warmth against my face and take a hot shower.
Mina
I have also done a lot of these things! I’m thankful that youve written them all down. I find when im having an attack i cant concentrate on anything!! If i feel an attack coming on then i can heat a rice pack or put a cottonball in but alot of the time i wake up in the middle of the night with a horrible attack and im so focused on when its going to be over, I feel bad waking my hubby up and asking him to go heat my heating bag! Do your "trigger areas change or get worse over time? I’m just curious because the usual touching my face does not set mine off as of now but hot or cold foods or cold weather or wind does aggravate it!!
tamina stewart said:
Hello elisa,
yes hot showers are great the steam helps alot i find.... im with u on the neck rubs i think it ticks it off lol
anything is worth a try when u are in pain i really hope u get ur pain under control .Mina xxx
elisa c smith said:Thanks! I have tried to have my husband massage the back of my neck and I do think it helps some. I also do the warmth against my face and take a hot shower.
I do find that the air con makes my pain flare up and much worse also STRESS … im happy my list has helped u also as i always say my heat pacj is my best friend hope u are pain free xx mina
Carissa Rinner said:
Mina
I have also done a lot of these things! I’m thankful that youve written them all down. I find when im having an attack i cant concentrate on anything!! If i feel an attack coming on then i can heat a rice pack or put a cottonball in but alot of the time i wake up in the middle of the night with a horrible attack and im so focused on when its going to be over, I feel bad waking my hubby up and asking him to go heat my heating bag! Do your "trigger areas change or get worse over time? I’m just curious because the usual touching my face does not set mine off as of now but hot or cold foods or cold weather or wind does aggravate it!!
tamina stewart said:Hello elisa,
yes hot showers are great the steam helps alot i find… im with u on the neck rubs i think it ticks it off lol
anything is worth a try when u are in pain i really hope u get ur pain under control .Mina xxx
elisa c smith said:Thanks! I have tried to have my husband massage the back of my neck and I do think it helps some. I also do the warmth against my face and take a hot shower.
that really made me laugh, for the first time this miserable week , thank-you, will dive down to the fields next time and grab one of the cows or sheep - no goats unfortunately but maybe the dog will do, in fact maybe I could get him to wear a lavender collar for full effect !
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Suzanne Marriott said:
Thanks Robyn! I never thought about getting a 12 volt heating pad for the car. That’s a great idea! It’s strange, my pain has changed since its first inception. Ice used to help in the early years, but now anything cold near my face is agony. I sure miss ice cream! I am probably the only one here that does this… this morning I went outside and laid my face against my favorite little pygmy goat, HA! She was lying in the sun and felt so soft and warm. She used to be a petting zoo goat, and must have been trained to hold very still when she was “on the job”. I find that stroking any kind of pet (and boy! do I have an assortment!) is very calming for me.
I have a lavender rice bag too! It’s great. I also keep a heating pad in my car. I plug it in and use it (I have to park though). The pain always intensifies for a few minutes. However, if I can withstand the first few minutes, it calms things down significantly. It just seems that everything is so individual I am so thanful for the forums and suggestions from everyone.
Robyn
If you have a lot of pain in the ear canal - i finally found that ear drops with numbing medicine in it - lidocaine - works pretty good and keeps me from reaching up and grabbing my ear setting it off again.
The effect of temperature seems to be episode specific. I used to put ice between my mandible and cheek. This was often effective. Eventually, I had an episode when the ice set off an excruciating pain surge. I did not try again.
I am currently pretty much symptom free. However, during an extended episode in the spring, I had a lot of trouble finding a position to sleep. Willing to try anything, I tried sleeping in a chair for no logical reason. It worked. I could get a block of 3 to 5 hours of sleep that way. I was apprehensive that it would cause some back pain issues. Fortunately, none materialized.
I sleep with a heating pad almost every night. I have been to a neurologist and he put me on tegeretol 200 mg bid and hydrocodone 10/500 mg tid. I am also on xanax 1 mg tid and zanaflex 4 mg tid. wellbutrin xl 150 mg 1 qd. I have been in the hospital for 5 days. I can’t seem to keep any food down and loosing weight like crazy. I am desperate need of some informative info. Just been diagnosed, but been hurting since July. About to give up completely!
Thanks,
Tonya Decker
hey girl thank you , i massage my neck i been feeling well
have yo heard of fish oil will i seen it somewhere i have no idea where
i found it but, am ready to try anything get off these pills
i think is messing with my head these pills lol!!
take care god bless thanks sally choate
Thank you for this.
Hi Mina, Yes I just got a heating pad and when I got the shocks I put it onthe right side of my head and face and it helps. I have notice that if I'm cold it gets worst, so I put a scarf around my neck and that helps too. Thank you for your suggestion. I read somewhere is not good to eat citrics and yesterday I ate half of a grapefruit and I got more pain after that. I will probably try a massage in my neck only. Good luck to all. Lety
I agree, it really helped to cut my hair short
Thanks for these suggestions. The heat really helps.
HEY HAVE YOU HEARD OF UPPER CERVICAL
DO YOU KNOW THAT WORK I JUST WONDER
I JUST WANT TO GET REID OF THIS PAIN !!!
WILL I SAW IT ON THE VIDEO !! LOOKS ALOT EASY THAN SURGERY LOL!!
LATER GOD BLESS THANKS SISTER