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I really need help diagnosing these facial neuralgia symptoms (Atypical Trigeminal Neuralgia maybe?)

Posted , 4 users are following.

Arte7267
Arte7267

I'm a 23 year old male. I just started seeing a neurologist and I've been seeing a chiropractic neurologist and a physician for awhile. I haven't been officially diagnosed with any specific pain/neuralgia condition yet. I've had an MRI of my brain and neck but they came back clean.

Here are my symptoms. It seems sort of like ATN but I'm not sure and I haven't had a doctor who will listen to my symptoms for more than 15 seconds before interrupting me thinking I'm crazy.

I have chronic 24/7 nerve pain in my face and eyes. Both sides, but one side is usually worse than the other, but the "bad side" changes almost every day/week. The worst of the pain is like a shooting pain behind my eyes. The skin on my face is like a slight electrical field. On and off I have a slight burning sensation across my face. Nerve sensitivity in my teeth & jaw as well as surrounding areas around my central face. However, unlike most people with TN, my jaw and teeth are not nearly that bad compared to other spots on my face, they're very minor. I also have brain inflammation. My top two vertebrae discs in my neck are both rotated and my neck is always stiff and sore. If I crack it, it radiates increased nerve pain to my face and eyes. I was told that my sub-occipital nerve is "screaming like mad." by a doctor, but this would obviously be separate than my tregiminal nerve. I have a ton of cranial pressure, especially my sinuses and the bridge of my nose. I can't touch any of those spots without it getting worse. If I itch either side of my forehead or touch near my eyes, they get worse and my eyes get inflamed. (Whichever eye/side is bad that day). My eyes are also sensitive to light. I've seen an eye doctor who told me that both of my eyes are totally fine. No inflammation or anything other than astigmatism in both eyes. I also get what seem like occasional excrutiating 10 second muscle spams below my jaw.

The pain varies day to day, but it is constantly there.

I'm constantly grabbing my head, touching my face, and jerking my eyes and head around with an incessant need to stop the pain or get it out of my face.

Cheers!

1 like, 11 replies

11 Replies

  • rashine32232
    rashine32232 Arte7267

    Posted

    I'm so sorry to here about your pain my heart bleeds for you because I know what your goin through! I begged them to cut the right side of my face off!!! In the beginning you just want to die! I've been their but there is light at thee end of the tunnel. I a had TN but I am No longer suffering thank God!! My MRI an head scans came back clean but I still had the Surgery an he found one of the worst cases he had ever seen! I had a vein wrapped around an a Artery punishing the Nerve he placed cotton between them and my 3 years of pain was gone instantly!!!

  • rashine32232
    rashine32232 Arte7267

    Posted

    You sound like you have it in the 2nd and 3rd branch and it is constant if your not on the right medication. What meds are you currently prescribed? It is Brutal without meds I would have never made it without something to manage the pain!!! You would first try Carbamazepine that worked wonders but I was allergic !! So then I was put on Neurontin that worked as well but I was on a very high dosage anything less than 2700mg did not help!!! After 3 years it stopped working for me and I got the MVD SUGERY an it has been a Godsend!! NO MORE PAIN INSTANTLY!!!
    • Arte7267
      Arte7267 rashine32232

      Posted

      Hi Rashine,

      Thanks for your input! I was just given a sample of Oxtellar XR by my neurologist to see if it treats my pain (which would mean it is in fact some form of neuralgia). When I see him in another week, hopefully he will determine which form of neuralgia I have. I know how you feel regarding your own and I'm glad that the MVD worked for you! I did some research into it the other day and it terrified me, just the thought of how that surgery is done.

      Are there simpler tests that they can do to see if there's a blood vessel pressing on a nerve, or do you have to go into surgery just to find that out?

    • rashine32232
      rashine32232 Arte7267

      Posted

      I sent another reply with detailed info but it had a curse word so it didnt come through. I'm going to save you time because the neurologist dont know jack! The test are process of elimination they rule out if you ever had shingles and MS Then they go by your symptoms electrical shocks some burning, it hurts to touch, wash or brush the affected area in your case your eye area and headaches and is it on one side of your face. Dont be afraid of the surgery I was literally up and walking around in 3 days like nothing ever happened! Like my Surgeon is the SH!@#$ he went in from behind my ear I barely have a scar an the only pain I felt after surgery was the stitches an a stiff neck from positioning but tylenol handled that. He even showed me video of my surgery he told me to take a picture of the computer screen but I took video of us watching! now i have video of my own brain surgery! My Surgeon is one of the best in the business!! Take that medication asap and up the dosage till the pain stops!

  • ele-mental
    ele-mental Arte7267

    Posted

    Sorry to hear you are suffering.

    Sounds like A-TN but mixed with other types of facial pain. Lots of the nerves cross over and send mixed signals.

    Never give up fighting rubbish doctors, as disappointing as it is!!!!

    I suffered an eye injury at work causing corneal nerve damage. The corneal nerves are part of the Trigeminal nerve pathway and have no protective myelin sheath, so are especially susceptible. 

    Luckily I have found a couple of great Neurologists.....but also have come across some of the most dodgy, corrupt and rude neurologists along the way in my court case against my old boss. I say corrupt as the legal neurologists in my case have ignored medical facts and my history to help the defendant insurance company. They have also completely contradicted the good NHS neurologists. 

    Statistics say it takes on average 6 different doctors before you get the correct diagnosis. It may sound disheartening to be transferred from one doctor to another, but often it is completely worthwhile as you will get to the right result.

    A lot of these consultants are rude and flippant. If you come across them - you must ask for a different opinion. You are more than entitled, just be brave.

    Good luck

    • Arte7267
      Arte7267 ele-mental

      Posted

      Thank you so much for your reply. I'm extremely sorry to hear about your eye injury. I suspect that all of my eye/facial pain stems from an eye injury 11 years ago, as that's the only real injury I've ever had.

      Also that statistic of 6 doctors to make a correct diagnoses makes total sense. That coupled with the "18 second rule" that on average, it takes a doctor 18 seconds before he interrupts you while you're listing your symptoms. I rarely find someone who will sit through my long list of symptoms.

      I was just given a 15 day sample of Oxtellar XR by my neurologist and told that if my pain gets better from this, then I have neuralgia. So assuming I do have neuralgia, then next time I see him he can run tests for TN/ATN.

      I hope your legal battle is/gets all sorted out and best of luck with treating your pain as well.

      Cheers 🙂

    • ele-mental
      ele-mental Arte7267

      Posted

      Hi Arte,

      It's possibly a long shot, but very interesting that you mention an eye injury.

      I have done around 7 years research into eye/nerve injuries and had around 30 consultant appointments. I was just looking through some of my research papers and thought you may like to read a couple of links to see if it helps tally up with you. 

      Below is a research paper into eye nerves, no protective myelin sheath in the cornea and how nerve pain can be affected by dry eye syndrome. Eye nerves can also be affected by inner eyelid scars rubbing on the surface of the cornea.....and vice versa- corneal scars can rub the inner eyelid which basically completes a repetitive, vicious, chronic cycle causing 24/7 A-typical type pain.

      download/open the "full text PDF" for full info and drawings.

      https://www.researchgate.net/publication/10803746_Corneal_nerves_Structure_contents_and_function

      Below is another eye nerve vs dry eye and corneal epithelial scar research paper:-

      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4366454/

      Below is the best research paper that quantifies corneal nerve pain that is felt beyond the eye zone :-

      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5063054/

      They might not be of any use but thought you might like to read. If you think it might fit your pain description- be prepared to come across some neurologists and ophthalmologists who don't like being told what is what and how you think it works or some who like to blame the each other as responsible to pass the buck but soldier on!!

      Dry eye syndrome can cause dry spots and a roughened surface areas which means eye nerves become exposed to air or rubbing more easily. This pain travels along to the V1, V2 and V3 junction in the temple.

      To me it feels as though the left side of my head is swollen like a rugby ball while also feeling like someone has me in a headlock while driving and twisting their knuckle in my temple.

      The best eye nerve scan I've had done was called an IVCM (In-vivo confocal microscopy), you will need to go through an ophthalmologist to get this done and it may take a while.

      The corneal nerves can be directly damaged which causes them to become "tortuous" (crooked like a lightning bolt) and beaded (beading means lumpy which is a sign the nerve is in pain and the lumps are neuro-chemical signals being sent along the nerve.). Eye nerves can also travel through scarred areas of the cornea and pick up pain. An ICVM scan was the only way to get specific photos of the damaged nerves.

      If anything is of any use and you would like anymore info or have any questions, you're always welcome to give me a nudge. 

      take care 

    • ele-mental
      ele-mental Arte7267

      Posted

      Sorry, forgot to say..... I may be wrong but I'm pretty sure there are no tests for TN or ATN. An MRI scan or CT scan are not as perfect as they are billed. There are many counts of MRI scans not finding nerve protective myelin sheath damage or blood vessel problems.

      These doctors pretty much diagnose TN, ATN, Migraine, cluster headaches, NDPH (New Daily Persistent Headache) all have no direct test and are basically diagnosed by a neurologist licking their finger and holding it to the wind to see which way the wind is blowing. They are not as scientific as they pretend.

      Some things are diagnosed by medication trials. 

      Apparently Hemi-Cranial Continua (HCC) has a specific medicine test. If Indomethacin does not help you then you definitely do not have HCC......except - when you delve into it the medication doesnt always work but they will only diagnose HCC if you respond well to Indomethacin.  

  • rashine32232
    rashine32232 Arte7267

    Posted

    You sound as if you have it in your 2nd and 3rd branch which causes headaches and eyepain, without any medication in your system the pain is horrendous! Let me save you some serious time and pain if the carbamazepine works granted you have to get to the right dosage I was on 2700mg OF NEURONTIN if it works for you and it's only on one side of your face you are a prime candidate for the MVD SURGERY! I HAD THE SURGERY AND IT GAVE ME MY LIFE BACK I WISH TO GOD I WOULD HAVE DONE IT 3 YEARS AGO. Mvd surgery, Penn Med. Dr. Lee. In Philly, he is the s**t! I was literally walking around carrying on life 3 days after surgery like nothing ever happened??? My Husband was laid up after surgery on his arm an I had just had brain surgery up an about only thing that hurt was the stitches behind my ear where he went in and tylenol solved that! He studied under the creator of the MVD SURGERY AND PERFECTED IT! He even showed me video of my surgery I watched him find the first offender then go around the back thank God he looked and found a 2nd offender a huge vein wrapped around it! He removed them and placed teflon cotton between it. Who ever you choose make sure they know what their doing! Oh an the neurologist is a waste of fcking time! GET THOSE MEDS AND THE SURGERY TRUST ME!!! OH carbamazepine is the best but I was allergic to it.

    • Stupid1
      Stupid1 rashine32232

      Posted

      Have you heard of anyone who has had the balloon surgery, I had MVD and I take Oxcarbanazepine (300mg) in morning and at night Gabapentin (900 mg with (Oxcarbanazepine 300 mg) at nite b4 bed. I still feel a little ting in my jaw where I had Microvascular Decompression (MVD) surgery, I still have double vision when I get really tired, and still have neck spasms, whenever I do physical work, so I don't do physical work but I do walk off the weight. I believe this was caused after I passed out in 2016, I think it is stress related that is my opinion. The pills I am afraid to get off of them and my Neurologist says he will try when I have no symptoms.

      My husband has me using turmeric and it has a really good healing affect on me, you guys might want to read about that herb.

      This is  only my opinion.

      GOD bless US And KEEP Us AND Give US Peace

      lets keep praying that doctors find a cure  for this miserable disease so that we don't have to have any form of  surgery.

       

  • Stupid1
    Stupid1 Arte7267

    Posted

    first, of all I don't know how old this post is but you need to get a new Neurologist. Ask your primary care doctor to send you to a young doctor.

    God Bless Us And Keep Us And Give Us Peace

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