Does anyone feel their pain all day and sometimes worse.
Why is that? And how do you make it feel better? Also does it make you feel very light headed
I have ATN also and the pain is always there. I notice my pain is worse when fronts come through. Of course so many things bother it. I have I in my scalp too so just touching my hair hurts. I have no answers on making it better I sure wish I did
I beginning to get it…
Amy Mantrow said:
I beginning to get it....
Always there for me as well. Worse when I'm in a car for some reason.
Nortriptyline helped the most for me for a while. At the moment I take 100mg nortriptyline, 120mg cymbalta, 40mg oxycontin, and still have bad days.
I have it most of the time, 5-6 days a week. When I go a day or 2 without pain I celebrate. Somedays are worse than others. The other day my grandaughter popped me in the nose and I thought I was going to die it hurt so bad. It was like someone set off a bomb on the left side of my face. Two days later it started to subside. The cold really sets it off and loud noises too.
Im waiting to try my meds the doctor gave me after the holidays,In the meantime I went to a holistic doctor and she gave me something to try… Maybe this will help
My old doctor diagnosed me with atypical facial pain, which is a nondiagnosis. My new doctor accepts my own rediagnosis as Type 2 TN. I'm not sure it matters, though.
I have boring, burning pain 24/7 in all the fleshy areas of my face. If I don't take meds upon wakening, the pain sets in and the day is bad, even if I run to take them when it hits. There is definitely a momentum dynamic to it. It gets worse by the hour. My meds are oldies: elavil (amitriptylene)/50 mg and xanax (alprazolam )/1 gm. You have to get used to any new med. Elavil used to put me to sleep and make me a zombie the next day, but that's way in the past. Some people might use xanax for a high (i've had vials go missing from my house, suspiciously), but I just feel a bit, well, settled. Mostly it blunts the pain. They tried to switch me to neurontin. Wow, THAT made me lightheaded. I had to stop it; there was no way to function.
I feel best if I take my meds upon wakening, then give myself a booster dose in 2-3 hours, get a short nap in the PM but not too late or insomnia is a problem. I take a third dose at bedtime. Exercising (cardio) in that late am/early pm brings relief while and just after I finish. It is important to keep physically busy (do errands/housework). There will be rebound pain, but I somehow feel better globally. Low atmospheric pressure days seem to make the pain worse.
If you work, if you sit at a desk, it's harder to manage the pain. For good or ill, I don't work anymore.
Im not ready to give in yet,holistic doctor gave me something to take the edge off…I have a hectic job and would love to excerise again…gotta try all options .
I was particularly drawn to your post because you have pain all of the time and it sounds like you've gotten the same diagnosis as I have: AFP. I never suggested giving in. There are still people out there searching for the best med combo for them and I feel sorry for them that there is nothing dependable for them to fall back on. They should keep searching. But I've got more acute med issues than TN. I'd kill to have my facial pain go away, but I'm of an age where the pain is only one of a number of concerns. DO exercise; it's important. I feel (and am) fitter while getting pain relief "naturally," but it's not the cure. Everyone's narrative is different.
I have been advised to try holistic remedies. My L.A, friend raves about how she's doing under the care of a Chinese fellow: she has myasthenia gravis. He's even apparently helped her shrink a tumor. She had to decide against doing the biopsy her western doctors recommended. But I live in the NY area and I am reluctant to trust just anybody. I've been accupunctured, massaged, biofeedbacked, etc. The fact is, I've detoxed twice (xanax is addictive) and tried a variety of drugs and treatments -- and had no success. So my motto is: "whatever works." If you find something holistic helps, please tell us. But would you have to cease prescription drug-taking? That requires a degree of trust that simply doesn't in me.
I've weaned off oxycodone in the past and it was nothing compared to the symptoms of cymbalta withdrawal.
I was a hesitant as anyone about opiates but honestly if you take them as directed they don't make you "high" and basically make you just have less pain more of the time. I work as a programmer/game developer on oxycontin and while smoking cannabis.
The only "natural" drug that's helped is cannabis, but even it in concentrated form (hash, edibles, BHO) isn't nearly strong enough to replace the drugs. I've had pain everyday for more than 2 years now, and it's spread a lot from where it initially started. The worst part is my eye, I get an ice pick stabbing pain when I move it left/right/up/down. Also a swelling feeling below the eye, along with a lot of pain below the temple, across the cheek, behind my left sinus, and inside the roof of my mouth on the same side. Lots of "ripping" and "tearing" feeling across the side of the face, feels like my face is being fileted repeatedly or acid is eating away the ligaments where they connect to bone.
I’ve had a couple interesting replys,thank you,im running around here,.but ive been stopped in my tracks here! Holistic recommandation so far is pain and inflammatiom remedy by homeopathic formula and 200mg of Zen for mood, I mildly helps and also womens supplements,a root called chiagia as a tea,and yes. I must confess alittle cannibis,Put it all togather and wammo,the game is on. I also know a diet low in additives and preseratives helps but this holiday thing and disappointment in this has made it difficult for me,But thats what newyears is for…
I have also had a good experience with mary jane, but I live in NJ and you need to be at death's door to qualify for med marijuana. It does get me high, though, which of course is nice, but not good for the waistline and not conducive to good cognitive thinking. The irony: NJ's first med marijuana clinic is in my town.
What is Zen for mood? Do you now what's in these remedies? I would't count out Xanax. Many TN patients are fibromyalgia sufferers. The later stems, I think, from a hypersensitive neuro system (what cause it I don't know, but I GUESS, in my case it was Epstein-Barr virus) . Xanax tamps it down so normal stress isn't amplified into pain. My GUESS is something like that applies to atypical facial pain/Type 2 TN. Is your pain on one of both sides? Mine is on both. Does anything set it off?
It kinda freaks me out, i think you can see my outline but been dignoised Atypical. My general doctor let me down,gotta find new one for sure! Unless he redeems himself! The whole thing is a disaster…,now im tring to peice it togather and get better, All that from dentist! Yeap, One side where work was done. What sets it off,its always on,but severity changes and cold sets it off for sure…
Amy,A Neurologist or pain management specialist may be in your future.Did your Doc prescribe tegretol?Often it helps tremendously.Yes,there are side effects,but nothing you can't handle most likely.
Tegretol never helped me -- but there is no one size fits all. That's the frustrating thing about this diagnosis. You should go to a neurologist, ask if it is AFP or TN, and make sure this doctor speaks from some experience and is listening to you.
Some people get permanent relief from surgery. If a blood vessel is impinging on the cranial nerve, they can be separated. But there are no guarantees.
Sometimes I wonder if it makes sense to catalog all pain patterns and see if there is a most effective treatment for each pattern. All I know for sure is there lots of options and you need to find someone knowledgeable about facial pain. Freaking out is forgivable and natural, but don't let that be your predominant response. You will have to be your own best advocate, helped by people here to the extent we can.
Hi Don,amitriptyline thats what nuerologist suggested, but why, im pain for reason,its not unknown… im not depressed and need meds,im in pain cause of dentist neglegence, Nerve damage… or something, I guess its just “Atypical”
Hi,
I have had some good relief from the very worst pain using various medications but it has taken a long time to find a combination that works for me. I still have some pain every day and i have found that exercising has really made a difference to my pain. Very rarely it has triggered worse pain but for the most part it makes me feel so much better which I have found surprising as i am not a person that is typically very physically active.
The other thing that helps is that I meditate every day. Now I don't always feel like exercising or meditating but when I do i feel so much better within myself. My pain is much worse in the winter so I am really enjoying summer at the moment, it was tough going when it got cold.
Hope you can find something that helps you. hugs
Good to know,I was always active til this,at the holistic doctors we did a mediative exercise…it was very relaxing… So i guess if i go for a walk tommarrow i better cover my face… Yea…I like that Trish a little exercise and mediation never hurt anyone.
Amitriptyline is prescribed in lower does for pain than for depression. I am not using it to treat depression. The source of your pain doesn't have to be depression, or something unknown, for it to be effective. Of course, living with pain 24/7 is depressing, but if you needed to medicate for depression, you would likely use another drug in addition. In fact, "atypical" suggests to me that the cause is unknown. You and your doc may not be on the same page in using this word. This is OK, though, if he runs the tests he needs to and recommends treatment that helps you.
Amy Mantrow said:
Hi Don,amitriptyline thats what nuerologist suggested, but why, im pain for reason,its not unknown.. im not depressed and need meds,im in pain cause of dentist neglegence, Nerve damage.. or something,,,,, I guess its just "Atypical"