Literally feel like dying , pain 24/7 No one understands me.

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I've had pain on both sides of my face and it's only gotten worse over the course of 2 yearssadIt's so bad like all the time, my cheeks burn! Like all the time 24 /7 the only thing that helped was dihydrocodeine, I was pain free, but I still kind of had a full feeling I had a ct scan didn't show anything, just minor swollen lymph nodes... I always test insanely high for EBV and I always heard that had something to do with nerves? any ways I'm a dumby and ran out of dihydrocodeine so now not only am I in incredible pain because of my cheeks , I can't smile, or a better description would be I don't. Please, I just want to know I'm not alone, I'm an 18 year old male and this literally has me considering suicide. What do I have to freaking tell the doctors to prescribe me something that works for my pain??? I'm out of pain meds and my face is literally killing me, it's worse on the left, but better on the right, although there is always an ache to it, It almost feels like there are nodes in my cheeks, like I literally can grab these little things in my cheek. Just help me get through the day sad I've dropped out of college, moved back in with my parents, and while supportive, my parents can't truly understand unless they've lived my hell, oh and now I'm scared because the infectious disease specialist said that my cd4 levels were a little low, 450. But I've been tested twice and negative both times.so the id offered the viral testing So you can imagine when my mother hears all of this...keep in mind she didn't know I was gay. I literally hurt so much, my face burns. And it's sucky because opiates work for me but I'm nowhere near getting any doctor to prescribe any. Should I just go to the er and cry?

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  • Posted

    First of all you need a good neurologist. At your age you may very well still be on your parent's insurance.  Then you need a referral to a good pain clinic.  Opiates these days are hard to come by unless you go to a pain clinic.  Be prepared to have a urine test regularly and your pills counted every time you go, usually once a month.  I've only had one "lightning bolt" episode.  But I've had the chronic Atypical Trigeminal Neuralgia since 2000.  Instead of lightning strikes, I have a constant pain in my jaw and teeth (makes my gums feel swollen). my face (feels like a bad sinus infection), and temple (feels like a migraine).  Since I also get regular migraines, the ATN migraines I call T-migraines.  They last a day while a regular migraine last about three days.  I was on Tramadol for 15 years until the pain clinics took over that med.  Now I take tylenol3 as needed.  I also take Xanax for anxiety.  This seems to calm my facial nerves also.  So I take 400 mg ibuprophen & .5 xanax four times a day.  T-3 as needed.  This mix has been a long time coming and we tried several different meds until we got the right combination that worked.  Don't get me started on Tegretol and gabapentin (Neurontin). They caused me problems with side effects and weren't for me.  TN is called the suicide disease for a reason.  Don't let it get that far.  Get thyself to a pain clinic now! Don't wait. And no more talk of suicide.  A psychologist wouldn't hurt either. They can give you meds for the anxiety caused by the constant pain.  Whether you realize it or not, the anxiety of the pain, or the thought of the pain, can cause the pain to be worse.  Talking from experience.

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  • Posted

    Have you been diagnose by a Neurologyst. You should of been put on  some other drugs to help the 

    aim, usually anti- epileptic drugs.    Contact Trigeminal neuralgia uk. They will be able to help you. 

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  • Posted

    Hi James - my heart hurts for you.  I would indeed go to Emerg and let it all out.  Cry as much as you can - this should be a very good signal to the medical staff that you are suffering to a point you can't take it anymore.  Try as hard as you can to get a doctor - if this is not possible, every time you are suffering go to Emerg - even if it means a few times a week.  I would certainly do this.  You are in need of a good pain med - and in no way should you have to suffer so greatly.  I would truly like to hear back from you to know how you are doing.  I have an incurable disease which causes constant chronic pain.  Chronic pain certainly has a way of turning your life upside down.  My very best wishes to you.

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  • Posted

    Firstly,EBV (Epstein Barr Virus) is Glandular Fever or Mononucleosis,a very common virus that a lot of fit young men and women are infected with .Most don't realise,or think it's a week or two of flu.Some (like my ex) had a very bad reaction to it.The docs thought he had cancer for a while and actually had him in hospital overnight to remove a gland in his neck for biopsy.Turned out he had EBV which left him with chronic fatigue syndrome over the next 10 years or so.On a different,but relevant note,my disabled daughter has Trigeminal Neuralgia .It was horrible before she was diagnosed and treated.And the only thing that worked were nerve pain meds,not opiates.She had an MRI scan which showed a vein looping over the facial nerve in her cheek.The consultant then prescribed Gabapentin and Tegretol,which we started her on a low dose and worked both up till they controlled the pain but had fewest side-effects.She also had Amitryptaline just before bed.These have kept the worst of the pain controlled for a number of years now.If the Infectious Disease specialist reckons your cd4 levels need treatment (I believe they should be lower?) then get the treatment.If you have HIV.why do you think your mother should presume you're gay.Tell her if you wish,by all means but it's an assumption that I don't think everyone would make.Many women and men have HIV status as a result of "straight" sex these days.I digress-if I were you,every time you feel as though you have pain you cannot cope with,take yourself off to ER or accident and emergency and cry your eyes out.You obviously haven't impressed upon them(or your Parents) how horribly agonizing this TGN is .

    XBeth

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  • Posted

    Hey-

    I was also very young when I was diagnosed-it's awful. Friends don't understand. I had a letter I sent to people that kind of helped-I'll find and send to you. In the meantime keep your head up (ha!) and know you're not alone.

    Hugs,

    Sarah 

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    • Posted

      Sarah,

      Hi and hope your doing well. If you don't mind me asking, would it be possible if I could get a copy of your letter? . I apologize if this seems intrusive but I am also having the problem if getting my family to understand.

      Thank you in advance for any consideration to my request.

      God bless,

      Paty

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  • Posted

    James

    Im new (3 months) once I have been diagnosed so I apologize but don't have any advice over any treatment. I've gotten good advice in this forum so I'm hoping you will to. However there is another support group on fb that has helped me A LOT. If you don't have Facebook, I suggest looking into it. There are over a thousand of us that can get and give fast advice. t's under "Trigeminal Neuralgia support group". Hope to see you on there.

    Paty

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