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Is this TN?

Posted , 6 users are following.

landon116
landon116

Hello all,

Im a 21 y/o male college student

 Today I write to you in the lowest point of my life. In october 2017 i experienced a sudden face "popping "feeling followed by a shock sensation to my forehead. It felt cold. I immediately fell into a panic attack because my father suffered a major stroke when i was alone with him when i was 15 in the middle of nowhere.  I had no symptoms of stroke, as i am very familiar with them.

  My symptoms of anxiety and the strange forhead feeling subsided but i was left with a mental fog and a pressure skin feeling on my forehead for a few days, i went to the urgent care and they said i had a panic attack.

Days later i developed an awful pain behind my eye. It hurt worse than my usual headaches. I went to the ER and they did an xray of my face and found nothing. The next morning i had a sinus ct and it was clear.

The terrible pain continues. I convinced my doc to get me a brain mri. The results came back clear. I went to a neuro opthamologist and he orded a contrast mri brain and orbits. Brain was clear, and eye came back with a " very equivocal optic nerve enhancement". Neuro opthamologist dismissed this and determined my eye and eye nerve was fine after a VEP test.

Terrible Pain continues. Referred to neurologist, they wanted to test for MS. Blood and spinal tap came back clear.

Pain is still bad, and eventually i was referred to an ENT. He is positive that it is trigeminal neuralgia.

The pain follows around my eye near eye brow  and now is traveleing up my forhead into an awful headache. Occasionally i get spikes of pain deoending on head postion and eye lid close or not.

This past month I have been stuck with a constant headache near top of left temple that blows up into a full migraine. Its awful right now.

This has been going on witb spikes of severe pain that last weeks on and off.

So far my ENT says TN

Several doctors say i have bad anxiety

But i worry in constant fear i had like a anuerysm or stroke or something even after docs have seen me a billion times.

Please help me!!!

Thank you all,

Landon

0 likes, 9 replies

9 Replies

  • landon116
    landon116

    Posted

    Also i must add, neuro opthamologist suggested TN. I went to a local well reviewed neurosurgeon and he just suggested it could be some form of atypical facial pain. For about a few months i have been on 10mg amitriptyline and diclofenac potassium when needed per ENT

    Thanks again!!

  • rashine32232
    rashine32232 landon116

    Posted

    Yes it seems to be I just had the mvd surgery an it gave me my life back no more PAIN APPARENTLY IT WAS A FRICKEN ARTERY AND VEIN ON MY TRIGEMINAL NERVE! you have it in the 3rd branch get you some carbamazepine and up the dosage to where your pain is relieved. After 2 1/2 years my pain came back that's when I opted for the surgery I'm so happy no more PAIN NO MORE MEDS!!! HOPE THIS HELPS call me if you need more info 267 622 7596. i remember when I felt helpless too an getting the run around! But there oui s light at the end of the tunnel My Surgeon is the S**T!! Excuse my language but he is!!! Are you on any meds?

    • landon116
      landon116 rashine32232

      Posted

      Thank you!! Im on a light 10mg dosage of amitriptyline. Not cutting it, i will look into that medication anf bring up your suggestions at my upcoming apt. Thank you!!! You give me a feeling of hope.

      Landon

    • rashine32232
      rashine32232 landon116

      Posted

      Your welcome hope it works remember carbamazepine is the best for TN an up the dosage until the pain is gone. Dont worry about them not seeing anything on Mri or brain scan because they couldnt see anything on mine neither. I watched video of my surgery and my Nerve was being punished by an Artery and a vein! He placed teflon cotton between it an I was pain free instantly.
  • kim89779
    kim89779 landon116

    Posted

    I too was having the same symptoms, MRI was also normal. Went to neurosurgeon and he tried several medications to control the pain. After a year of suffering I had MVD surgery. When my doc did the surgery he found an artery and a nerve we’re tangled like Christmas lights. So even if the MRI is normal that doesn’t mean you don’t have it. My neurosurgeon told me that 30% don’t show up on an MRI

    Good luck, it’s been 8 months pain free ❤️

    Kim

    • landon116
      landon116 kim89779

      Posted

      Thank you Kim. I am going to suggest this to my doc this week. Did you ever suffer from periods of just constant pain?

      Thank you again for your comment.

  • rashine32232
    rashine32232 landon116

    Posted

    Landon let me save you some trips to the Dr. If it is on one side of your face, it feels like shocks or stabbing and it last from 2 seconds - 2min per hit your a candidate for the surgery not sure how long the headaches last. They wont do the surgery if you got tn from shingles or Ms
  • patricia_93319
    patricia_93319 landon116

    Posted

    Hi Landon, 

    I understand what you are going through. I was diagnosed with TN a couple years ago and mine almost always started or escalated with a headache. I went back to primary doctor recently and mentioned that, and she gave me a prescription for Immitrex (I take generic version), and I take that when I feel it building or starting and it almost immediately takes it away or dulls it. This has been a true life saver. 

  • Notrightnow
    Notrightnow landon116

    Posted

    I'm sorry to hear you're having problems and that the doctors can't seem to find the source of it.    

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