Trigeminal Neuralgia

Discussion in 'Fibromyalgia Main Forum' started by donnae197, Mar 1, 2006.

  1. donnae197

    donnae197 New Member

    After 2 weeks of excrucating pain and 5 Drs later I am DX with Trigeminal Neuralgia today when I brought it up with my sleep disorder neuroligist. Along with FM, CFS, Lupus, RLS, PLMD... I now add yet another DX I have never heard of until now.

    I see that some of you suffer form it too. I have been on Neurontin for about 5 months for my RLS and PLMD and it has done wonders. I have suffered for headaches for as long as I can remember with them last for days, weeks and the latest severe one in October for over a month. Now, the headache in October I am told was Trigeminal Neuralgia and possibly a lot of my past headaches. I guess it's good news to find out the "why" it's happening. My biggest "why" is WHY ME??? I think I have enough on my plate! I am the only person I know that can go to a Dr. for a check up and come ont with a new DX!! LOL Anyway, he wants me to increase my Neurontin 900mg 3x a day. Guess we will see. How have those of you with TN survived the pain?
    Thanks for letting me vent!! :) Bless you all!
  2. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    Whatever side of the syndrome you lean towards of FM or CFS, just think of yourself as having that along w/ the T.N. The rest are common parts of the syndrome, and Lupus can be so close to our condition I'm not sure why they give you yet another close cousin of dx. No wonder you are feeling overwhelmed. I just say I have FM and have done w/ it, works for me.

    On the plus side, at least they are believing you have something. Many people come away w/ no real dx, just the vague depression cop out.

  3. I'm not sure I understand exactly what your doctor means by diagnosing your *headaches* as trigeminal neuralgia..

    Can you explain that more to me, please?

    I was diagnosed with TN in June 2002, and I had a terribly BOTCHED UP surgery for it in April 2004, after I had maxed out my anti-convulsant medication I was taking for it, and being young, and having fast progressing pain with my TN being in all 3 branches of the nerve, as well as the Vertex area,(top, mid-head) on my left side, my neurologist thought I would be a good candidate for a Balloon Compression Rhizotomy.

    He referred me to a the only local Neurosurgeon around here, I spoke with her she seemed calm, confident, excited about helping me out of this pain....however..her appearance did concern me, for a neurosurgeon...or just a doctor, period..the woman's appearance is quite unkempt..always a ratty ponytail of brown tangled hair. (She rides a Harley, = tangled hair) No make up & WRINKLED clothes. But, as I said..confident, explained the procedure, step-by-step.

    I should have asked the most important question in the world... "How many of these have you done/when was the last time you did this surgery?" Answers: 1, 3 yrs before.

    Anyways, after that my pain was 10 times worse, I couldn't eat, could barely open my mouth 1/4" without bursting into tears from the horrible stabbing, gnawing, exsplosive pain in my face..

    I was referred to Indianapolis, Methodist Hospital. There I had radiation therapy done, or Gamma Knife Surgery, also called Radiosurgery in June, 2004. The pain didn't improve much at all, I was still on steroids, pain medication, & anti-convulsant medicaion. (I had to be on steroids & pain medication continuously since the surgery in april, to keep the pain down.)

    In November 2004, I was treated again, with radiation therapy, the pain lessened some, but, I still required steroids frequently for flare ups & pain medication, I did 12 day tapers of the steroids & pain meds. I was put on Topamax, Before surgery I was on Trileptal. I had also been on Zonegran, and combinations of the three,

    Now, I have been on Topamax, Lyrica, and MSContin, & MSIR for breakthrough pain, but, after severe jerking, twitching, vision problems, and muscle spasms on the Lyrica, I was told today, by the pain clinic to stop the Lyrica, after something happened last night while in bed.

    So, that's what I am on to cope with the pain. I also just have to avoid the wet, cold, windy weather as much as I can, which is pretty much impossible in Indiana.

    I have two different scarves I wrap my entire face up in, in cold windy weather, to avoid direct contact. I also drink from straws, instead of cups, as a coffee cup triggered a flare once, and I'm a bit 'gun-shy' of them now.

    I have to be careful when washing my face with a washcloth, but, not overly, just mindful of what I'm doing.. and I watch out for my dogs, as they mean well, but my beagle/dashchund mix has busted me in the cheek with her bony head before and sent me into a world of hurt!

    So, those are *some* of the things, that I have been through with this, and some of the things I do to make this more bearable..

    Take care,


    P.S. I was also diagnosed with Multiple Sclerosis, along with TN, FMS, & CFS in fact, I was diagnosed with MS when I was in Indianapolis, meeting with 2 neurosurgeons for evaluation for Radiation Therapy for the TN,
  4. donnae197

    donnae197 New Member

    The way my Dr. explained my headaches may have been TN is he said it's possible for the brain to interpret the pain of trigeminal neuralgia as related to a headache even though it's not a HA... All I really know is it HUrts beyond what I could have ever imagined and the only relief I get from it is when I have the Neurotin in me (which is hard when you have 2 kids (no spouse) and you feel like crawling in a hole).

    I read on someone's post that when the kids come home, she retreats to her bedroom and was missing out on her kids life. I can relate. I do the very same thing! My son, a drummer in the school band, who LOVES to bring the beating home with him (which is good...) well, the sound is deafening. Even trying to talk on the phone hurts.

    And the saying, "But you look fine!" Makes me want to knock them out! LOL If they ONLY knew.

    I have a handicap parking plate and after leaving the Dr. I went to the store to pick up a few things. I was getting out of my car and a man looked at me like he was going to say something about me parking there. I was in so much pain that inside of me, I dared him to say anything!!! If people only understood what we all go through. It's not how good we look on the does WONDERS!'s how we feel on the inside.

    Thank you to all of you! You guys pull me through my hardest days!

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