Hello, I am 28 and have had ATN/Type2 for 2 years now. Although the pain runs along my trigeminal nerve…I also have symptoms that don’t seem to match anyones. I have pain on both sides of my face, all three branches and this pain is constant. The pain stops when I’m asleep but as soon as I wake up it starts up and lasts all day. There aren’t many triggers besides just thinking, stress, and activity. Wind, heat or cold doesn’t bother me. The drs I see are really stumped and my pain is excruciating/unbareable. I’m barely making it at the moment. Has anyone else had anything similar to this? I have tried several meds and feel like Im running out of options. Thanks.
Hi, I also have TN2 and my symptoms were similar in that the pain was every waking minute for the year it took for a dr. to finally figure out I had TN. When my gp put me on gabapentin within a week I felt some relief. I have never suffered every waking moment since then, although I have had triggers which exacerbated my pain. The unrelenting pain in the first year was torture. Wind, heat or cold doesn't bother me either. It feels weird to read about others talking about it but we all have our own version of hell. 24/7 is no picnic either. STRESS is my biggest trigger and there are many of us here who share that trigger. I suspect it affects TN2 sufferers more than classic TN but that is just going off memory of postings I can recall.
Can you share what meds you have tried and whether they did not help you or you couldn't tolerate the side effects? I am on gabapentin still although at a higher dose than 4 years ago and a few months ago I added nortriptyline which seems to help TN2 sufferers in particular. It has greatly diminished my stabbing headaches.
sw88-
My symptoms started very much like yours. Constant unrelenting pain on both sides of face when awake; along all 3 branches, but the lower two branches were much worse. It was a gradual onset & finally became unbearable. Triggers were teeth brushing, movement of my mouth (including eating). No problem with wind, heat or cold. Stress definitely worsened my symptoms. I had similar results as shadow2 with gabapentin, but kept having to increase dosage. I ended up seeing specialists in 12 different medical fields before a friend of mine (an MD) did some research & figured it out. I had a pain specialist (MD) change me to pregabalin & amitriyptyline, which has helped tremendously. The tricyclic antidepressants (TCAs) have a much better effect on ppl like us with constant pain vs. ppl with classic TN (where the pain is episodic). She (pain MD) thinks I had an infection that ultimately affected & damaged the trigeminal nerve (perhaps the ‘shingles virus’), which is why my pain experience is different than ppl with TN Type 1. TCAs have been shown to inhibit pain signals in a number of patients with nerve damage. Hope this helps.
p.s. Before I had a pain combo that helped, I did get some relief from acupuncture
Thank you all for the responses! I guess ill go into more detail about everything… When it first started… It only was there when I was doing something but if I was just sitting, laying or at ease it wouldnt be there. The description that came to mind is that my body had literally lost its own ability to calm the nerves during any activity. Just thinking about something even non stressful would spark it. It all started after a small dose of prednisone. It also affected the sinuses and was in the exact trigeminal placement… Bottom two nostrils, around all eyes and eyebrows including my eyelashes burning, ALL Of my teeth top and bottom… And cheeks. Mainly burning on fire and shocks. When im in the shower, asleep or sometimes blast heat/cold in my face or outside when its really hot or col I can get it to settle down… Oh, and during eating it calms too. Makes no sense! Like I said … Its like the trigeminal nerve just doesnt calm. I can’t exercise or talk alot either. I have been on tegretol, lyrica, gabapentin, cymbalta, nortyptiline and amytriptiline…as well as ton of pain meds. Cymbalta used to help me a little until i maxed it out. Its also senstive to smells! My skin on my face has also changed… Really tight, increased wrinkles and pealing/dryness, and even hives at times! Most of my adult life ive been anti-meds so ive even developed a very healthy/strict diet and life with no results. My mind keeps saying to try klonopin but im scared and know the dangers but better than feeling suicidal! Has anyone tried this for nerve pain… Ps… I know my symptoms are bery weird
I have suffered with ATN for 4 years. I have constant, burning pain on my forehead and nose. In the early years, Gabapentin helped some, but it stopped working for me after a year of use (3600 mg/day). I have MVD surgery in 2013, which helped me break my horrible pain cycle that brought me to the ER every week for six months, but I was still left with a constant 6-9 daily pain. For the first few years, I got the relief that you get at night. I could literally wake up feeling good, and in 5 minutes be in horrible pain again. Unfortunately those painless nights are gone for me too. I have none of the common triggers. Since I am in terrible pain all day, it just escalates even more when I exercise (other than slow walking), get upset (crying kills me), and illness of any kind. I end up in the ER each time I get sick since nothing will break the 10 pain but IV meds. I wish I could tell you I had the miracle drug, procedure, etc. to help you. I have honestly tried it all. I am now off all preventative meds, and take a half of Percocet 2x day and a few Tramadol. Another salvation is wearing a refreezeable ice pack on my head, held on by a bandana. I am fighting, and I mean FIGHTING my insurance company to get approved for a peripheral nerve stimulator implant. Feel free to 'friend me" on Facebook if you have questions. I hope that I can somehow make lemons out of lemonade and help someone struggling with my same battle. Love to you. Lora Smith Romney
It is so strange that what bothers you does not effect me- but the slightest breeze or cold causes instant pain- We are all the same and all different in what causes and what helps. My first time at urgent care was for electrical shocks coming out of my forehead. Had no idea what it could be. Since it is a teaching hospital, they asked if I would mind a student examining me. He it the nail on the head right away "TN". That was 13 yrs ago. Sleep stops it-but if I have to get up in the night -bang- it starts again. The hardest part is finding some place to put my head at night. If my ear touchs the pillow it starts. Since I have ON-the back of my head is out of the question. Since I can not breath face down. What to do? I have found sleeping in a wing chair supporting my back with pillows. One small part of my forehead touchs the wing of the chair. The only spot I can find that does not hurt. I have tried almost every drug around. Had injections, ablation, MVD. GK and all have failed. Does any one else have that glorius feeling of waking pain free. I don't want to blink-breath, just feel pain free. Well of course that does not last. And back we go into the cycle. New drugs are always coming out and some work for a while. Because I am in stage 3 kidney failure, I have my PC, Neurologist and Kidney dr all working together. I have also had a series of TIA's (mini-strokes) so balance those druges with my others. I am 67 and intend to stay around for a while. I am going to beat this. I am in control of my life and will be darned if any of these conditions combined will the get the best of an Irishman (woman). Crying makes it hurt more- so I save it up for a big bawl to cover eveyrthing. I do what I can do - try on some more- and ignore those things out of my realm. Keep putting one foot in front of the other. Have a cup of tea to calm down, and DO NOT give up. You are not alone. You have people who understand, who care about you and our best wishs. You are in charge - question how many TN's you dr treats. get more opions. Educate your self. Demand good treatment. You have our support anytime you need it. Not medical advice, but a lot of comparisons on what may help. Most of all you have the love and understanding of so many in the same boat. Once in a while just relax and let the rest of us row for you.
I have it in the right side of my face... and on the right side of my rib cage under the scapula, wrapping down and around to the liver... and in the right arm. I don't know for sure, but I suspect I had shingles without a rash. I thought something was wrong with my liver or gall bladder and so did my pcp.
Two years later, I find the pain to be mysterious. It feels like different things at different times, everything from numb to fire, to cold, to bruised. Constant pain for 2 years
The good news is that in the past two weeks I have had periods of time with no nerve pain, like 24 to 48 hours or even a little longer. I have no idea why I'm getting this reprieve. If I did I'd shout it from the rooftops for you, in case it might help you.
I am doing a lot -- eating a paleo diet, using and inversion table, icing my neck at night, chiropractor, B12 shots, magnesium. I also keep a rule for myself that the mornings until noon are mine to take slow and do self care.
I wish I had answers for you. I don't. But I do share in the mystery of it all. I'm seeing a new neurologist and praying that he actually gives me a diagnosis and suggests a possible treatment that I haven't already tried.
you have to try some lidocaine ! I apply it to my gums and it can give me up to 3 hrs of relief. After using it for 2 months I was able to reduce the episodes of burning pain significantly. I am now trialing an oral paste that contains Lidocaine 2% /capsasin .025% /amitriptyline15% / gabapentin5%... it seems to work also but has a bit of a hot sensation ( an easy trade over the pain). My oral facial pain specialist believes that it stops the nerve from firing if used 3-4x/day over months. For me this has worked better than any meds. I have ATN x 2 yrs ,no identifiable triggers either - except cold .
Thanks everyone! Golfgirl-- does the lidocain only work for the teeth pain? Or the pain all over the face too?
it definatley works on the teeth and gums but for me it also lessens the deep ache that I feel in front of my ear and deep inside my head. I have also read that many here use the lidocaine face patches. Anything to stop or lessen the constant pain, gives you a break, helps to stop you from going crazy ! Good luck - in Canada i can buy the lidocaine creme over the counter - its called Emla.
Hi karen - I had very similar symptoms to you. I finally was diagnosed with thoracic outlet syndrome (upper plexus). I had a rib resection, scalenectomy and I feel tons better. I am adding this in case this diagnosis doesn't work out for you. I suffered with constant pain for 4 years..... Good luck
Karen said:
I have it in the right side of my face... and on the right side of my rib cage under the scapula, wrapping down and around to the liver... and in the right arm. I don't know for sure, but I suspect I had shingles without a rash. I thought something was wrong with my liver or gall bladder and so did my pcp.
Two years later, I find the pain to be mysterious. It feels like different things at different times, everything from numb to fire, to cold, to bruised. Constant pain for 2 years
The good news is that in the past two weeks I have had periods of time with no nerve pain, like 24 to 48 hours or even a little longer. I have no idea why I'm getting this reprieve. If I did I'd shout it from the rooftops for you, in case it might help you.
I am doing a lot -- eating a paleo diet, using and inversion table, icing my neck at night, chiropractor, B12 shots, magnesium. I also keep a rule for myself that the mornings until noon are mine to take slow and do self care.
I wish I had answers for you. I don't. But I do share in the mystery of it all. I'm seeing a new neurologist and praying that he actually gives me a diagnosis and suggests a possible treatment that I haven't already tried.
HI aliscott, So you also had pain in your face?
aliscott said:
Hi karen - I had very similar symptoms to you. I finally was diagnosed with thoracic outlet syndrome (upper plexus). I had a rib resection, scalenectomy and I feel tons better. I am adding this in case this diagnosis doesn't work out for you. I suffered with constant pain for 4 years..... Good luck
Karen said:I have it in the right side of my face... and on the right side of my rib cage under the scapula, wrapping down and around to the liver... and in the right arm. I don't know for sure, but I suspect I had shingles without a rash. I thought something was wrong with my liver or gall bladder and so did my pcp.
Two years later, I find the pain to be mysterious. It feels like different things at different times, everything from numb to fire, to cold, to bruised. Constant pain for 2 years
The good news is that in the past two weeks I have had periods of time with no nerve pain, like 24 to 48 hours or even a little longer. I have no idea why I'm getting this reprieve. If I did I'd shout it from the rooftops for you, in case it might help you.
I am doing a lot -- eating a paleo diet, using and inversion table, icing my neck at night, chiropractor, B12 shots, magnesium. I also keep a rule for myself that the mornings until noon are mine to take slow and do self care.
I wish I had answers for you. I don't. But I do share in the mystery of it all. I'm seeing a new neurologist and praying that he actually gives me a diagnosis and suggests a possible treatment that I haven't already tried.
Hi again - I had a terrible headache over my eye, burning on the top of scalp, pain behind my ear and weird feeling in cheek into now. I guess pain behind my ear is a good tell tale sign. My pain worsened if I used the arm, but because there was a constant headache, neck pain and arm involvement, the diagnosis was long and painful. Im sure I saw 20 doctors before I finally had a scalene block. I had 95 percent relief and thus went ahead with surgery. I am grateful I persevered. Good luck Alison
aliscott said:
Hi karen - I had very similar symptoms to you. I finally was diagnosed with thoracic outlet syndrome (upper plexus). I had a rib resection, scalenectomy and I feel tons better. I am adding this in case this diagnosis doesn't work out for you. I suffered with constant pain for 4 years..... Good luck
Karen said:I have it in the right side of my face... and on the right side of my rib cage under the scapula, wrapping down and around to the liver... and in the right arm. I don't know for sure, but I suspect I had shingles without a rash. I thought something was wrong with my liver or gall bladder and so did my pcp.
Two years later, I find the pain to be mysterious. It feels like different things at different times, everything from numb to fire, to cold, to bruised. Constant pain for 2 years
The good news is that in the past two weeks I have had periods of time with no nerve pain, like 24 to 48 hours or even a little longer. I have no idea why I'm getting this reprieve. If I did I'd shout it from the rooftops for you, in case it might help you.
I am doing a lot -- eating a paleo diet, using and inversion table, icing my neck at night, chiropractor, B12 shots, magnesium. I also keep a rule for myself that the mornings until noon are mine to take slow and do self care.
I wish I had answers for you. I don't. But I do share in the mystery of it all. I'm seeing a new neurologist and praying that he actually gives me a diagnosis and suggests a possible treatment that I haven't already tried.
Hi Alison,
I do feel some odd tightness in my armpit and neck. So the next time I see my pt I'll ask her opinion about thoracic outlet. it's quite possible I have more than one thing going one.
The neurologist said as much today - he diagnosed my face pain, but tended to think my arm pain was "something else" and was uncertain about the rib pain.
It's such a long story. <sigh>
Karen: thoracic outlet syndrome can cover a large number of symptoms. traditional TOS is in the ulnar distribution only - this thought has changed. Do you hands get cold/blue/blanched? Your physio would have to really know about the syndrome. Johns Hopkins and Wash U have some good information on it. Thanks to Wash U - I feel better. Unfortunately, I have the same problem on the other side. I wish you good luck - I have such a long story too…dont give up!
Karen said:
Hi Alison,
I do feel some odd tightness in my armpit and neck. So the next time I see my pt I'll ask her opinion about thoracic outlet. it's quite possible I have more than one thing going one.
The neurologist said as much today - he diagnosed my face pain, but tended to think my arm pain was "something else" and was uncertain about the rib pain.
It's such a long story. <sigh>
Hi Allison,
Reading it, I have to say it makes some sense. I think the nerve pain in my face is probably not related, but the arm and rib pain could be from this. My pt is a specialist in head and neck, so I hope her expertise goes "down" far enough!
Thanks
Karen