Very new to TN/ATN and need help w/ first dr visits

Welcome New Member Introductions
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Hello everyone, I’m very glad I’ve found this site. it’s already provided me with some helpful information and hope even before i signed up.

I’m 27 years old and within the last week or so started to develop the worst pain I have ever felt in my life. I have terrible teeth problems (yeah, even at this age) because of inhaled steroids for asthma. I have broken teeth and cavities, so I am not unfamiliar with what dental pain feels like.

But soon I realized that my teeth were not where this pain was originating - it was the joint of my jaw and just in front of my ear. It feels like someone is slamming a hammer into the side of my face, stabbing a hot needle into my TM joint, pulling my teeth out with pliers…i’ve never experienced anything like it before. The pain would spike so suddenly and so high that I froze in place, shaking and crying and drooling because my mouth wouldn’t work. It radiated down either side of my throat, up in my cheekbones and the back of my head and shoulders. I can’t wear my glasses for long because they press on my nose and the sides of my head. I haven’t been able to eat or sleep well because of the pain. There are times when it is constant, and it is bilateral.

I’ve been taking OTC pain meds even though they don’t work - I need to feel like I’m at least trying to do something. I just started taking benadryl today and I had quite a few hours with no or minimal pain, though I can’t say that was the benadryl for certain. I’ve been sitting with a heating pad cranked up to high wrapped around my shoulders/neck/face.

Even though it hasn’t been a long time, I understand why everything I tried to research on this subject describes it oh-so-cheerily as “the suicide disease” thinking that this could be permanent is devastating.

However, I’m going to try and survive.

If anyone has tips for going to a doctor for the first time, I would sincerely appreciate it. I am on state medical care, and i do not have the resources to just…pick a neurologist and go. I’m so scared that everything will take so long that I can’t handle it and the pain kills me. I’m also scared that because I am young and female they won’t take me seriously, or that they’ll just refer me to a dentist, or they think I’m just trying to get pain meds.

I would appreciate any advice on how to talk to a dr about this with maximum effect, and things I can do at home to help mediate the pain. Opinions on if this does sound like TN/ATN are much appreciated also.

Thank you so much,
Xylo

2

Well, if it is TN (And you’d really need a referral to a Neurologist to be sure), no traditional pain meds will work. So you shouldn’t run into any issues there. There are meds that help, but they’re actually not pain medication at all… they just happen to help TN pain as a happy side effect. One such med, and the one I’ve tried, is Gabapentin (it’s an anti seizure med)… it works great for me, but your mileage may vary. Unfortunately I can’t take it if I want to continue working where I work, so I had to take the surgery route (don’t worry, I’m an unusual case… The meds aren’t normally an issue for most people and work… I’m a pilot and the feds won’t allow it in my case).

I would go to your regular doctor first, and let him know the symptoms… perhaps even mention your suspicions. If this is the first occurrence, it might be a hard sell… it may be a nerve infection. To be sure of TN, I had to show it was long term and episodic when I saw the doctor. Sadly there is no test… it’s all based on symptoms, so all the boxes need to be ticked to get a diagnosis. If nothing else, see if they will give you a prescription for Gabapentin… or any of the other meds often used (I can’t remember all of them unfortunately). If nothing else, it may give you some relief while you narrow things down.

Good luck!

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Hi Xylo
Sorry you needed to join us-but you are smart and will get through this.
Please get a copy of STRIKING BACK -by George Weigel and Dr.Casey.
A library might have it.Or you may have a regional TN organization in your state that has copies.
It is like a bible for all of us sufferers.Lots of info on what may be happening and lots of info(that easy to understand)about doctor appointments.
Funny about the benadryl.Somewhere I read that it is works partially on the opioid sensors that we have in our brains so can provide some relief-as I find opioids(for me,and I am unusual)work better.I am experimenting with benadryl myself because the traditional meds(tegretol and trileptal) did not work for me.
They will want to do a brain MRI to rule out other causes-and see what is happening.
Regardless the cause for your face pain ,and I think we all like to know what happens with new members,please let us know.
People here are the most,awesome,kind,compassionate people in the whole world.
Sorry you have to be here
Home meds and ideas to try
B12-sublingual-see how much you can take-some people go up to 5000 units -but I don’t know what works for you
anything that will calm you
stress seems to aggravate TN-so meditation(I know) or whatever works.I find listening to waves at a beach helps me.

BUT really-you need the MRI to see if something is causing the pain.If it is brutal enough can you go to an emergency at a large hospital?
Hugs

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Thank you to both of you! I appreciate the responses <3

I do plan on going to a dr and eventually a neurologist, I’m just nervous about how long it will take for me to get there because of my insurance. Thank you for the book recommendation! Luckily I live right down the street from a library, heh.

I will try the B12! I was reading another topic here that had several people saying this helped them too. Stress is…a constant factor in my life and i know the pain was definitely worse when I was panicking about it so for sure I will try to get into a habit of meditation or prayer.

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I also had pain where feels like my teeth are being pulled out. Was awful. I have ATN . I learned on this site that tricylic anti depressants work best with tn2 same thing as ATN. So i tried nortriptyline becuz many ppl on here told me was the way to go they were right and im pretty much pain free and live the most normal life i can. This disease takes awhile to accept that u have it. Your life will never be the same but as long as we all work together to keep each other out of pain. Biofreeze is a good quick fix for me i use it on back of neck numbs u for a bit.

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Hi xylobryte, Like robnewman said if it is TN you will probably need some very heavy meds to cover it. I hate to tell you but even with the heavy stuff it only makes it livable. I’m not alone here and neither are you these are great people that can empathies with you because they have all been through it. Don’t listen to anyone that tells you this is the suicide junk. Sure its tough but we all are still here and you need to be also. I have had cyber and gama knife and MVD. I am still on opy’s but don’t give up. oh, and they gave you good advice about getting and MRI its the only way to tell and it’s not fool proof. Some of the people here have had to go through a lot of dental junk just to find out they really do have TN. I have a close friend that had to go through 4 root canals just to find out it was TN all along. Very best to you and one more thing.
If you think you are going to have MVD don’t go through the cyber and gamma thing. It of course causes scaring and makes MVD worse to handle. I know , I did the cyber stuff. If I had known about the problems it causes I would not have done it, but to late for me. Anyway keep fighting and don’t let anyone just push you around ( thats and inside joke, as you can tell by my nickname) >have a good one!

1 Like
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Hi!! Welcome to this group!! I know some websites call TN “The Suicide Disease”, however that is a very old label that might have been true about a hundred years or so ago. The suggestions posted on here so far are good. I also might ask that you go to Wikipedia and look up Atypical Trigeminal Neuralgia. This article is mainly written by a friend of mine, Richard “Bud” Lawhern. This is has a good explanation of both TN and ATN. I might suggest printing the article and bring it along with you on doctor visits. There are several frontline medications that might be able to help you. Carbamazepine (Tegretol), pregablin (Lyrica), gabapentin (Neurontin), etc. These are all anti seizure medications and for many work well. There are many possible side effects with these drugs as well. I suggest going to Drugs.com to view them. Baclofen (nerve and muscle relaxant) also seems to help many and is taken in conjunction with the previous medications. One piece of advice I want to give you and that is to advocate for yourself. Ask many questions of your doctors and don’t just let any of them brush you off. Fire doctors if they are not helping you and then look for others that will. There are many Facebook support groups and I suggest you join some so that you can meet many others with the same pain and issues that you have. This group here is also a great resource to ask and look for answers as well. There is one FB group that is very helpful and that you can join and that is https://www.facebook.com/groups/TNATNONSufferersGroup/