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  • New Diagnosis Going Crazy

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    Old 05-24-2021, 12:28 PM   #1
    Kg333's Avatar
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    New Diagnosis Going Crazy

    So, I was recently diagnosed with Trigeminal Neuralgia, which didnít come easy, and I imagine it didnít come easy for many people suffering with this. The struggle of finding a doctor who doesnít leave you feeling as if you need to be institutionalized is the most frustrating of all. I had basically given up all hope on the medical community, as it was almost a more attractive option to suffer silently than have anyone think that youíve lost your mind.
    My last appointment, which I had no expectations for began with ďI promise that Iím not mentally ill, and I am not smoking crack, but I also promise you that it feels like there are bugs crawling in my skin, and please donít give me a referral to mental health ď
    And for the first time in a long time, someone didnít.
    For years I suffered from corneal ulcers and from eye pain that seemed like it would never resolve itself, with intermittent headaches that were beyond any migraine I had ever had. I attributed the headaches to whatever was going on with my eye during that time. It was chalked up to stress and anxiety. I remember going to the dentist complaining of unbearable tooth pain and never leaving with an answer other than, itís probably just the nerve it will calm itself. Nothing ever seemed related to one another. I kept getting a rash on my face and the more it aggravated me the more I would dig at it, and I again chalked this up to stress and anxiety as everyone always did. It was hard to know what came first the chicken or the egg, but after several rounds of different anxiety medicines my entire mouth was on fire. I couldnít eat anything. Everything was too painful to tolerate. For two years I would choke down an ensure meal replacement and try to work thru it. I lost about 50 lbs during that time, and had become severely anemic. A biopsy on my tongue was done, which I truly wouldnít wish on my worst enemy, and it was of course inconclusive. No sign of any viruses, bacteria, no unusual results were found.
    Normally this would be a sigh of relief to a person, to know that they were healthy, but I think thatís when I kind of broke down. I KNEW that something was wrong and I was ANGRY that no one would listen to me. That has since mostly resolved itself, but the rash had started up again, and it felt like there were shards of glass in my face just digging themselves deeper and deeper, I would spend hours trying to find them, convinced there was a foreign object in my face. I felt like a crack head, trying to pick imaginary objects out of my skin. I thought perhaps I had parasites in my skin as it seemed to feel like the stabbing sensation was almost crawling. I had resolved to go see a dermatologist, who informed me it was simply dermatitis but I knew better. He basically insisted I see a psychiatrist because I had manifested this entire story and there were no bugs in my skin, only crazy people said that. I decided I would never go back to a doctor again. The symptoms didnít stop the sensations didnít stop, I felt crazy. My mom, God bless her, was always on ďteam not crazyĒ maybe because no one wants their child to be a delusional psychopath, maybe because she believed me, but either way she made me an appointment with her doctor, and reluctantly I agreed. About half way in to this appointment something in my head told me to just mention everything else, just tell her about the last several years of torture and I think I said ďcould they have anything to do with one another? They are all right there together, is that just a coincidence?Ē Immediately she asked me ďis it always your left side or predominantly the left or is it bilateral?Ē I said- I guess it is predominantly the left side. She said, Iím not going to give you any medicine at all but I am going to refer you to a neurologist, because what youíve just described to me is actually a real thing, and you are not crazy. Maybe it was the validation that I was not a raving lunatic, but I did follow up with the referral. Since the neurologist visit Iíve been taking 300mg of gabapentin, but I feel like i havenít noticed any improvement other than Iím actually getting a good nights sleep. I know not everyone experiences the same things, but anyone have any suggestions on strategies to ignore or calm the creepy crawly sensations? I can handle the pain but itís almost unbearable.

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    Old 05-25-2021, 04:00 AM   #2
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    Re: New Diagnosis Going Crazy

    My sister had TN and it was a long road for her to get the dx and appropriate treatment. I will tell you that 300 mg of gabapentin is a very low dose for this condition. They will start you out lower and go up eventually as needed. You might check the Facial Pain Association for a doctor in your area who is approved by them. There are at least 2 surgeries available for this if you qualify. One is vascular decompression - which my sister had - and gamma knife procedure which is a newer procedure. Good luck!

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    Old 07-22-2021, 02:49 PM   #3
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    Re: New Diagnosis Going Crazy

    So sorry you are going through this. I know how frustrating it can be to not have an answer from doctors and therapists. Some are caring while others are rude and dismissive.

    I chose not to go the route of medication, other than a prescription NSAID and muscle relaxer, due to the side effects, so I'm sorry I can't help out with that.

    Did your MRI show a definite cause for your TN? In my case a cause was not found. But it seems to be directly related to muscle spasms in my neck, which sometimes causes a strange creepy sensation in the front of my neck. I am seeing an upper cervical chiropractor (NUCCA doctor) and I am noticing a difference.

    It may sound strange, but in some cases of TN upper cervical doctors have been helpful. It's my understanding that nerves come out of the upper neck and join the trigeminal nucleus. If your neck is out alignment it could possibly cause facial pain and discomfort. There is a lot going on in the upper neck with the brainstem, spinal cord, and nerves all right there. It may be worth it to talk with an upper cervical chiropractor?

    Wishing you well!

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    Old 09-07-2021, 05:13 AM   #4
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    Re: New Diagnosis Going Crazy

    I hope by now you have been in touch with someone who has referred you to a brain MRI to see if an artery is touching your trigeminal nerve?
    If there is nothing touching your nerve there, I agree with Yoys that you should get the upper neck checked as well. An MRI of the upper neck can show if anything is touching the nerves in your upper neck or compressing the spinal cord.
    Write back on how things are going for you and if you have made progress, interested to hear from you, you are not alone

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