I am very confused about ATN, I truly need to speak to someone because I have no one to turn to for questions

1

Recently I have developed soft spots behind my left ear and in front of it, plus a tender spot on top of my cheekbone, also a slight burning sensation on my cheek, plus a toothpick kind of sensation on the edge of the lip... Also some light burning sensation on the eye lid.... also a bit of burnt feeling on tongue (which subsided) (This is all on the left side of my face)

I asked my GP and he mentioned neuralgia, but left it like that.

Wondering I started to google and found trigeminal neuralgia but I don't have those severe bouts of pain that come and go, my pain is more of a dull burning like sensation that is pretty constant and that kind of corresponds with Atypical Trigeminal Neuralgia.

So I printed the symptoms out and took it to my doctor and he told me that while my symptoms match with ATN, I am still lacking that stabbing pain.

Basically ATN is neuralgia with the stabbing pain plus a dull ache in between, while classical TN is stabbing pain with no pain or sensation in between bouts of pain. He also added tender spots behind the ears are not trigeminal neuralgia because the nerves do not go around there.

Does that sound correct?

I don't know what to do.

the sensation is about a 3 and started two days ago, but I felt little discomforts here and there before.

I read about pre-trigeminal neuralgia. Does that sound like it?

I really don't know where to turn or should I wait to see if the sensation goes away? (it's been two days)

What are the exact symptoms of ATN?

2

Hi anxious,

Hope your pain has improved and you are finding relief somehow. Heat bags can be wonderful for me, especially the wheat ones.. I sleep on a warm one :)

The following I write based only on my experience as I have ATN and do have some similar symptoms to you, which include the soft very tender spots behind the ears, my temples and in front of my ears. If I press on them it makes my pain more intense. I have sharp pains and icepicks, brick heavy migraines and dull aches. It is different every single day. The dull burning is always there, and worsens as my pain relief medication wears off. I find reading about ATN there are many symptoms and not all of them apply to all people.

My feeling is you are doing the right thing questioning the symptoms early, as many of us are turned away by the doctors early in our quest for diagnosis and help. You may have neuralgia which is essentially nerve pain. You may have any other condition than TN, eg TMJ, but better to investigate as only you know the level of your pain and how often. I didn't understand mine for a while because it came and went. Eventually it stayed constant which it has been for almost 3 years now.

For your next appointment I would suggest you could take a family member or friend with you. Be very honest with your doctor, tell him you are back again because your pain has become really noticeable and constant to you, and you have been searching for answers.

You could print some of the relevant pages from the Pain Info tab up the top of this page, and highlight the symptoms that apply to you. Spend some time talking this info over with the support person you are taking with you. Being a TN specific site with a wealth of knowledge and knowledgeable people, these pages are very specific and reliable, and most importantly recent information...I would then give this to your family doctor, presenting it to him as a repeat, and discuss it with him again...(be strong, you are your own advocate - as you would do for a loved one that is in pain) and ask politely for a referral to a Neurologist. He may not agree this is TN and he may be right, or he may be wrong. You know your body and your pain and truly it is best to pursue some help if it is affecting your ability to function. Keep asking for that referral. A Neurologist will know the right way to approach this if it is nerve pain.

I hope this helps a little, and hope some other TNers can chime in too :)

3

Hi Anxious! I know how awful this can be! I have had it for 23yrs. I only started getting relief when I started on Homeopathy. I take Swansons Earache Relief....Swansons Migraine .......Swansons Nerve Pain Relief and Boiron Sinusalia as any fluid or sinus congestion makes TN more painful. This is pretty much what I take when needed and it has helped a lot and is very affordable.I hope you get some relief soon!

4

Hi anxious,

Sorry you are still experiencing discomfort.. there are so many reasons possible it would be hard for anyone to say for sure what is causing it. We are all part of this discussion forum mostly as patients so can only give our opinions based on our own experiences. It sounds familiar to me from early in my TN journey but I didn't know why it was happening to me back then, which is why I have replied to your thread. It's really hard not knowing what to do...Over the internet isn't going to diagnose, but maybe point you in some relevant directions.

It could be any number of conditions some of them simple to resolve with your doctors help. It could be sinusitis for example. Which you could see a Ear Nose and Throat Specialist and have Xrays taken to find the cause. The burning pain is similar to ATN so you are right to check out all the info. For which you would see a Neurologist who would order an MRI if they feel it is needed. I was diagnosed with "Regional Pain syndrome" at first because my first Neurologist didn't believe my description of "stabbing" and "lightning bolt" pain fit the TN1 or TN2 symptoms. Which we know does describe TN1. Sometimes it is necessary to keep pushing through and until we see someone knowledgeable that can help.

The best idea is to see the correct specialist doctor and go from there. Be serious and upfront with your family doctor and ask for the referral because in the meantime you are left wondering where this discomfort is coming from. Stress is often a trigger for ATN or neuralgia and you can be feeling worse for worrying, I know I do. The night before my appointments are always more painful due to me overthinking and racing thoughts. It is very hard to wait for that appointment I know, but the specialist will best know how to investigate and find the right treatment for you.

While you are waiting though is the best time to collect your own information on how this discomfort is affecting you. have it ready to take to you appointments...keep a simple diary of how you feel throughout the day, when your pain is triggered and what things make it more noticeable... Can you find things that help such as heat bags or massage and write those down to refer back to.. have you tried anything alternative such as homeopathy as Erin suggests above. Hope you can find some relief anxious xx

5

Hi anxious,

Yes ATN it does mark your day...very hard to live with... He is right there.. but I did experience similar feelings to what you are describing early in my TN...That's not to say it is TN. I hope for you it is something you can manage with your doctor.

My story, my first appearance of TN the burning pain was so bad that I thought was caused by a tooth that had root canal before as it was on the same side, so I had it removed. I wish I hadn't. I miss it! It was my best chewer! Lol. The dentist didn't believe me when the stabbing pains started too, and when they became more frequent.

I wasted almost a year going to the dentist and the dental surgeon who kept saying wait and see...They told me TN is just too rare and I couldn't possibly have it. The start of mine had burning, tingling lips and eye and the worst headaches, that no amount of paracetamol would help. The tingling on my lip and chin was really strange.

I sought help from my family doctor when I realised this was serious and I couldn't live my days without over the counter medications and heat bags.

I do experience both excruciating 9/10 pain episodes with TN1, averaging every 2 weeks or so now with prescribed meds. They are like the volume dial on my pain has switched up to 9 and stays there, I can't move or speak and they often bring me to my knees. The TN1 stabs to describe them are like electric knitting needles stabbing me from the inside. I get through using breathing techniques.

Then also I do experience continuous every minute of the day burning, gnawing pain, which has the sharp stabbing pain any minute comes and goes and now it's hard to tell when it's gone really.. and especially when my meds wear off which for me is so up and down all day. I think I've forgotten what it feels like to have no face pain which is really sad. No meds have ever taken my pain away completely so far. I wish I could have investigated sooner and maybe been medicated correctly it may have stopped the progression..I read here that if you can get help earlier you stand a better chance of recovery or better management.

From what I've read you can be experiencing ATN without the stabbing pain. Everyone's symptoms are different at different stages as it is progressive. I'm no professional just a patient, but I remember what it feels like to worry and wonder what is going on? Is this real, why is this happening and if it can be helped. I've been checking back here, as I also have a discussion question up as I am going for another MRI my second in 2 months.

I write all this thinking I hope someone like yourself can receive some comfort in my words. I'm a pretty sensitive person and hate to think so many people feel this pain. The beauty in this site is we can all talk openly about something that is so hard to describe to our family and friends.

Anxious, I really hope for you this isn't TN. I haven't often commented here, but thought you sound like you need someone on your side :)

Mel xx

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I really don't understand them sayin its rare when my best friends dad has it. A lady that is my moms customer. Another one of my friends parents has had it that I talked to. how does this make it rare I really think this disease is growing. My story is alot like mels had a tooth did a root canal then had to pull it and so on burning awful pain yes i had a migrane with mine definately. and no i did not have triggered symtoms at all

7

-Dear Anxious,

I can't read all of the posts on your discussion as well as I would like to however, I would like to comment. BTW, the reason is that I am having one of my most severe days ever and have been having trouble with blurry vision due to a migraine, which was set in motion by the TN.

I have TN2, which was caused by dental surgery when I was only 19 or 20 years old. It started slowly, just periods of pain on the right side of my face. It is now a 24/7 part of my life and I am on a lot of medication. It took me 30 years to get a diagnosis! My point is, don't let the doctor's push you around. There are various things that can cause the symptoms you are describing. If you don't get answers from one doctor, move on to another, I actually got my diagnosis from a pain management specialist after trying several neurologists.

I'm glad to see you have had an MRI, that should pretty much rule out MS. But make sure to ask the doctor that ordered it if any lesions were found. If they only found one, they generally don't say anything. You need more than one for MS to even be considered. If you did have any lesions, insist on a lumbar puncture to rule it out completely. My daughter has MS and went 15 years between "attacks", therefore, not being diagnosed as early as she could have been. I'm not trying to scare you but her second "attack" involved numbness on one side of her tongue and face.

Have you had any dental surgery? Even things like root canals? TN2 is often caused by damage done to nerves during dental work. I don't even mean recently, it could have been years ago. It took about 4 years for my first full blown "attack" from TN after I had my wisdom teeth removed. Prior to that, I just had facial numbness.

Like I said, just don't let any doctor's tell you that nothing is wrong if you know that something is going on. It may even be related to your inner ear issues. Also, if you have pinched nerves in your neck and shoulder, it can cause the sore spots around your ear. I have those as well and did a lot of research regarding that just last night. YOU know your body better than anyone else does, listen to it and make sure that docs listen to you! I truly hope you do not have TN but if you do, there is help out there and you are in the right place.

Best of luck to you,

Cathy in MD

BTW - If I have misstated any info that anyone sees, please reply to it. I am still learning.

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What everyone is saying is true.EVERYONES TN is different i was actually diagnosed with TN by a ETN bcuz it started in my sinuses amd EAR. Mine quickly advanced in ATN which is now being called TN 2b. I had my first MVD. And a vessel had grown inro my nerves and it is permanently damaged. I hooe to god you dont have this horrible disorder. Be your own advocate. …i used to say to myself you work for me. My advice would be to get a younger and don’t stop intil someone pays attention to what your saying. That is the most aggravating when no one will listen.
Have you asked here if there is a great neurologist that anyonw has worked w in your area?