My pain seems to be moving. Usually it is concentrated in the upper jaw area in the upper gums and teeth.... Today I was feeling good and a good friend of mine agreed to do my hair. BIG, BIG MISTAKE. I have been putting off coloring my hair because usually you have to sit under those hair dryers, then they style your hair. So my friend colored my hair and left it in the foils for me to drive home and take out the foils and rinse.... She had to rub the dye in... I have never had pain at my hairline until today... owie. Of course, this set off an afternoon of fun (says sarcastically).
The newest pain that scared me was this:
1. When I breathe in through my nose, it is like thousands of needles stabbing me on the inside. I of course cannot breathe in through my mouth either.... that sends my gums into intense issues.
2. A pain in my eye.... hard to describe it exactly. It is like my eye is aggravating my eyelid and lower eyefold. My eye, when I move it side to side, makes it feel like I am scratching my eyelids and skin below my eye.
Anyone experienced this? Anyone have any tips for how to breathe without causing so much pain????? Pain is one thing. Not being able to breathe is another.
apparently pain in the eye is linked to occipital neuralgia I suffer with this as well as trigeminal. The pain I get in my eye feels as though someone is poking their finger through my eye lid from the inside out !! not nice at all, thankfully i have not had pain in my nose like you but hope you feel better soon !!
Pain in the eye isn't occipital in origin, NY. The occipital nerve serves the rear quadrant of the head from the midline of the skull back. Pain "behind" the eye is sensed from the occular (middle) branch of the trigeminal distribution. My wife deals with pain in that area too, intermittantly on both sides at different times.
Lisa: concerning the triggers you seem to have in your breathing and intake of breath through your mouth: I've heard in the past from patients who did somewhat better by breathing through a wool scarf. It may have something to do with warming and moisturizing the air before it comes into trigger zones. Have you tried that?
My pain would move from back of jaw to nose area to cheek to tongue and then back to jaw. It was like it was running laps. It took several days/weeks to do this. My lightning attacks would move slightly from jaw to front of eye, from jaw to ear, and all over. It usually covered at least 80% of area at a time.
Lisa, I had a Brazilian Blow Dry done a few weeks ago. (Chemically straightens your hair) I have it done once a year no problem (Before TN) This time the chemicals effected my TN eye. It hurt/ached for a few days but then wore off. I put it down to the TN causing sensitivity in my eye.
I had no problem with breathing. I also breathe through a wool scarf when out walking in the cold, as to warm up the cold air, the warm air seems to help as my trigger is my tooth.
I get the horrible nose pain, too. The only thing that helps me is to heat up a rice sock, shuffle the rice around so it's toward the bottom and then breath through the warmed up fabric. If you don't have this, you can use a warm wet washcloth, but it should be fairly thin. I also have been known to slather vaseline in my nose because I have a theory that is covers the nerve endings. Sometimes it helps.
I have nose sensitivity more than tooth sensitivity, so I also wear a scarf around my face most of the time. I'm going to look pretty ridiculous when Spring hits... lol.
Hope some of my techniques help you! It's definitely no fun.
Lisa, I have had pain that seems to move from one area to another. My main pain is located in my lower left jaw all the way from my ear to my mouth. I also always have continuous swelling under the jaw at the lymph node. Lately though my pain has been in the center of my cheek and then goes up through my left eye and up over my head and settles down the back of my head to where the brain stem meets the neck. I will usually wake up like this and it will last forever it seems. I have not had the stabbing pain in my nose but have had sever burning, like acid or something was in my nose making it raw. The only thing I could do was choose which area gave me the least pain and go with it. I choose my mouth to breathe through even though it was intense pain. I compensated by putting heat on that side so that it would be warm and relaxing. Good luck to you, my experience was horrible but your experience sounds worse. One more thing, I start using the nasal saline mist because I have severe allergies and it has helped drain all the icky stuff from my nose and sinuses. I don't know if that will help but it helped the burning sensation in my nose a lot.
I wear a hat with ear flaps outsid only and a scarf inside all the time.When its bad!! People make fun of me but I don't care. I also had pain in my scalp for years and had to go to a hair dresser with a light touch for years, but then when I got on Effexor which is an SNRI (anti-depressant) that went away thank goodness that was annoying. But now I have Bilateral ATN and now I am noticing the jaw pain is going back and forth from left to right somewhat. oh my goodness.... I hope that this annoying and painful nose and eye things go away quickly for you!! All my best to you Lisa.
Great ideas everyone... I think I will try the scarf idea... I do have a rice pack that I can try if the scarf fails. I tried breathing through my blanket yesterday, but couldn't make it so my face was not burning from touching it. Darned if you do! Darned if you don't.
Sometimes I get an awareness in my eye. I think it has to do with the meds, which dry you out. If they give dry mouth, it's not too far of a leap to assume they dry out my eyes and sinuses as well. I've been using eye drops here and there just to keep them moist. Not sure if it helped, but I haven't felt that problem in a while.
I haven't gotten my hair done in a while, but it never gave me any problem. Perhaps since she let you drive home to rinse it out yourself, the dye was left on too long and burned your scalp a little? I know that's possible.
Your mention of chemicals struck a cord with me. I was spraying chemicals without a mask and the next few days had lots of lightning attacks. I got a mask that has charcoal filters for chemicals and the next time I sprayed I didn't have the attacks. It worked for me. You would have to get one that didn't touch a trigger point tho.
My initial attacks came at my left lower gum-line. Now, two years later the stabs are firing at my mid-left cheek, behind my eye and nose. My pain blast intensity has always been excruciating when I'm in the midst of a "pain-cycle" with little "pain pinch" spasms that keep my on my toes and bracing for the next Taser jolt. "Ahhh, the Good Life..."
It's a given that we've all had TN, etc., pain, but from reading through the comments on the Forum it seems like everyone's pain and frequency is a bit different. Thanks, Rick
auwww Rick I am sorry to hear that you are still suffering two years on ! My initial pain came in the back of my head then moved to lower jaw, then up to top of cheek area. Some months later pain also began in my eye lid and can also spread on occassion across my face in a line and the pain can only be described as tiny little electric shocks as opposed to the "bigger" or more intense pain on the left side of the face where I have had constant pain now for 7 months. This is a personal question and no worries if no reply, however I am still off sick from my role as a Social Worker and do wonder if there will be a day when I will be able to return to work ! Does anyone experience pain on a daily basis, have extreme tiredness AND hold down a paid job?
NY--Thanks for your concern and I hope your 7 month "pain cycle" stops soon. I find that reading through the forum comments, we can all find someone else who is having a tougher time of it. I'm not implying that's a good thing, but it's just something to be thankful for (and people to pray for).
To your work question, I was able to retire in 2008 after a 33 year career, but had planned on working as a contractor for another 10 years. The TN and to a lesser degree, peripheral neuropathy nipped that plan in the bud because for starters I'd be required to do a lot of public speaking and air travel. Take Care, Rick
NY said:
auwww Rick I am sorry to hear that you are still suffering two years on ! My initial pain came in the back of my head then moved to lower jaw, then up to top of cheek area. Some months later pain also began in my eye lid and can also spread on occassion across my face in a line and the pain can only be described as tiny little electric shocks as opposed to the "bigger" or more intense pain on the left side of the face where I have had constant pain now for 7 months. This is a personal question and no worries if no reply, however I am still off sick from my role as a Social Worker and do wonder if there will be a day when I will be able to return to work ! Does anyone experience pain on a daily basis, have extreme tiredness AND hold down a paid job?
