I'm sorry Barbara, I'm sitting here nodding my head and imagining that I'm looking all wise and knowledgeable but in actual fact I just read your post and went ".......huh????" Not very helpful, am I.
I am really interested in strategies people have for coping with ATN. I have both types, but my TN1 is mostly managed by Tegtetol. Not so with my ATN. i was recently prescribed Codeine to combine with Paracetamol, which does help, but knocks me out and gives me a subsequent hangover. Also, should not take it more than once or twice a week.
Sometimes, I get a preceding headache around the forehead, and if I am quick to take 200mg Ibuprofen + 500 mg Paracetamol, it sometimes goes away. Sometimes.
I am not great at managing my ATN, so I am looking for more answers. I do yoga, and guided meditation, which sometimes gives me a half hour release, especially with deep breathing techniques, and I tried something called Medical yoga, which was actually very good, and I was pain free for hours after.
Otherwise, I actually feel much better after exercise. I walk to work if it is not too windy, 35 mins each way, and that gives me a lot of release after. Even martial arts and intensive strength training relieves my pain. It seems to be the blood circulation that does it. I also feel better after I eat, and I suspect that too to be from better circulation.
However, my worst trigger, which I cannot escape, is computers. I don’t know what, but it might be the glare from the screen, so I am looking into buying a glare filter. Any tips are most welcome! I started working 25 mins then 5 mins break (called the pomodoro technique), which helps on good days, not so much on bad, but it is definitely helping! Sadly, I am bound to work a lot on the computer, and I neither can nor want to reduce my working hours.
That’s me, keep the strategies coming! It’s so good to learn what other people do.
hi tineline. I am still at unofficially undiagnosed (8 months of trial,error,and pain). I have been told atypical facial pain.I have tried lots of different things.i have nortriptyline 50 mg at mo,i meant to have 75 mg,but am trying to sort out my dry mouth,and sore mouth (not working btw) by taking 25mg less. I have rubbed on my r/s face something called voltarol,it has diclofenac in it,sometimes it helps,sometimes not. I rub dragon balm on my face too,that has capsacian (spelling) in it,basically i believe its made from cayenne pepper.Thats can help.I am making up my own cream later,baby oil ,mixed with proper cayenne pepper.Also one that i havent tried is honey put into nettle juice,it apparently treats neuralgia.I havent had one day in 8 months where i have been totally pain free unless im asleep. Let me know if you find any good ones.
Tineline, exercise helps me, too. Anything that gets the endorphins flowing. Sad thing is the pain comes back as soon as I'm done but it is a wonderful reprieve and helps with stress. I had to quit my professional job,which was sitting in front of a computer all day with cold air blowing everywhere and stressful deadlines. I now work part time in a physical job where I'm interacting with people (food demos). I love cooking demos because I can hold my face over a steamy skillet or stick my head in front of an open oven, heaven! The a/c and refrigerators do bother me so I always have a norco (hydrocodone) in my pocket and usually have to take it. I take 3 a day, and also Lamictal twice/day. This is the ONLY thing that has helped after years of procedures and every anti-seizure and anti-depressant I could try. I also use lidocaine cream and gel. I even snort it up my nose since much of my pain feels like my sinus. Worse pain is behind and under my eye. I know that feeling of flaming arrows in my eyeball. Also feels like a knife stabbing. Funny thing is (haha) I used to always say "I'd rather have a fork stuck in my eye than do that" and now I DO have a fork in my eye! :-o I've been flared up the past couple of weeks and the whole area under my eye is so sore, like bruised feeling. I always have swelling and usually redness on that cheek, so ATN really does make strange appearances. I've been having a lot of anxiety lately due to finances and it has really ramped up the pain. I've got an appointment with this psychiatrist on Friday who does prescribes meds but also teaches yoga/meditation/mindfulness sessions. I'm sure it's expensive and insurance does not cover it (heck, I have such a high deductible, unless I get hit by a bus I might as well not have insurance anyway.) I'm so glad I came on here today. It's been awhile and this was the perfect discussion I needed today! Thank you all for being here!
Honestly, I don’t know how I do it. I had 2 failed MVD in 2011 and 2 failed Cyberknife in 2012. I developed full numbness with electrical shocks after the 2nd Cyberknife. Originally before the procedures I had TN2, now I have both. I use to work 45-55 hours a week and now I make myself atleast work 30. I am very lucky with my job, they are very understanding and I can leave anytime I need to. At night time, I say I am not going to work the next day, but I always get up and go. A lot of times I don’t make it but I have to force myself to have that distraction. Really, it’s my family is the reason I don’t let TN win. Now I know, I will have to live with this awful disease for the rest of my life. I attacked it so hard when I was first diagnosed. I was not going to stay on meds so I had the procedures. Boy, if I would only of knew, I would end up in more pain than when I started. Im sorry, this probably didn’t help. Bottom line, my mind has to be stronger than this disease!!!
((((((Hugs))))))
Hi all.I went to pain clinic yesterday,no more 'new news',except the pain doc said they have seen something on MRI,but will look much more closely at it (they saw sclerosing osteitis before,but that was argued by dentist),so will wait till 29th sept to see an oral surgeon/facial specialist.I go to a very large teaching hospital,and feel quite ok there. Not having a good time this week. I have a very bad throat,inflammed glands and a red throat,and an ulcerated mouth.I have had alot of pain.I guess any other issues make the ATN worse.Is it possible for all this pain to be something else other than ATN or atypical facial pain/CRPS. My teeth dont hurt as such ,like there is an infection,but they feel odd on the r/s.I cant explain it,but they feel achy,but when i touch them,they dont ache,and the pain seems to come from gums,which are burning at mo.My symptoms seem to worsen as the day goes on,and are at its worst at around 5pm to 8pm. Does anyone else have a certain time their pain is at its highest..I want all this to be over,and to be ok again. Trying to be positive,but in my real world,i have to pretend to be ok cos no one 'gets it',so its a silent torment. Better days to come i guess
Oh Barbara, that sounds so painful and miserable. You poor thing. I've never heard of anyone with ATN with ulcerated mouth and red throat. I would not be surprised if you have something else going on. I hope whatever it is, it can be treated and you will get completely well and find out it's been the cause of all your pain -- and no ATN life sentence! I'm glad you are seeing a facial specialist. I know what you mean about no one getting it. I don't even try to explain it to people or even mention it to people anymore. It is a silent torment, bad enough to have the pain but having to suffer silently sucks.
((((Hugs))))
Mary
Yes Barbara, I too have the ATN on my right side and it usually gets worse as the day goes on, 5-8pm is generally the worst. I have actually found something that's almost abolishes the pain (for a few days).
Last weekend I was at a party (not drinking but still trying to have a semi normal life) and a good friend of mine offered me some marijuana, me wanting to take the edge off the pain I decided to have some, at the time the pain felt weird ( to be expected I guess) but the next morning I woke up with no pain, no pain all day, no pain until late afternoon the next day, I left it a couple days and the pain was slowly getting bad again then I had some more and its back down again.
I know you might frown upon my marijuana use but, honestly, I'd rather have a natural plant that actually works as a pain relief every few days than to take mouthfuls of chemical pills a day that hardly do anything. Its fully illegal where I live but I mentioned it to my doctor and he supported my method of pain relief, and if it were legal here he would prescribe it to me
Not at all judgemental! While I do it to have a good time, as I don’t enjoy alcohol very much, I have noted the very pleasant ‘side effects’. Illegal here as well, and I am fine with that. Even if it is natural it has some strong chemicals going on. Don’t forget; natural substances have chemicals too, and they are generally not tested and monitored for safety…
Thanks mary for the hugs..The throat and ulcers are a separate issue,but boy do they make your face pain hurt more. I just rubbed more voltarol onto my face,and later i rubbed the caspacian cream in too. i must make my own 'cayenne pepper' face tonic. I bought some nettle tea today as nettles arent in season now,you add honey to it,and apparently helps with neuralgia,but am sure it means 'proper' nettles,but will give it a go..will let you know
Hi kiwi,well i was tempted to use it myself,so i did ask someone at work if they can roll one up for me,however i chose not too,as i knew it defo would rid the pain,and didnt want to use more and more to deal with the pain.However i wont rule it out........
I've used the mj too. It didn't do much for my pain level but it did make me not care as much! It's not legal here either but you do what you gotta do. Kiwi, that's wonderful it did so well for you. I told my sons that I had been smoking it and they cracked up cause I'm 61 yrs old.
Yes I don't want to be having to take mj all the time, only on the bad days. I was just really surprised at the results though.
I do think it helped the gabapentine work better though coz I haven't had any mj for a week and I'm still almost pain free, although I'm getting the odd spike of type 1 tn which is new as I've only had atypical.
With your tn did it start in one place then move to other parts of you face over a few weeks? Or dose it only hurt in the same area ? Even during the day the pain moves from one part of the right side of my face to another part
Yes, it started with just one branch and tn1 stabs. Rapidly (over a few months) migrated to other side and then all the lower 4 branches, and after a few years all over. It since has evolved to include atn, and can even be at both sides at once, but asymmetrically. Never symmetric pain. It now even manifests in toungue, teeth, throat and ears. This condition never gets boring!
This is a great thread! I can’t believe the comments about the pain changing. I am 48 and newly married to my 2nd husband. As I discernible the gnawing, pulling, burning, tingling, stabbing pain. Or I say I feel like I have a ice pic in my eye. Or a 50 lb weight hanging on my face. He must think I’m crazy!!! The pain changes and it’s bizarre. I too smoke MJ. It does help with pain if used at regular intervals. My dr knows and thinks it’s helpful. Nothing really helps but pain meds and MJ take the edge off. Good days… I do as much as I can, bad days…I just try to get thru it. I too have no pain when I sleep which is a blessing. But I hit the floor in the morning, take any where from two steps to a half hour later and it hits me like a slap in the face… This site, although new to me is a very helpful resource for info, support and a great outlet.
Kiwi, what kind of mj did you use?