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Trigeminal Neuralgia- anyone else get attacks in the middle of the night?

Posted , 10 users are following.

marla87781
marla87781

I have been diagnosed with TN about 2 years ago.  My first attack was while I was putting on my make up, and after that when I had an alcoholic drink.  Sadly the frequency has increased to every 5-8 days but always in the middle of the night.  Can’t figure out why. Wore a night guard to rule out teeth grinding as trigger.  Wondering if anyone else has attacks while asleep. I am new to the forum and desperately seeking advice.  Thank you. 

0 likes, 18 replies

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  • dawn_49415
    dawn_49415 marla87781

    Posted

    Hi, I have had TN for nearly 10 years, although my medication eases it slightly through the day, I still wake up twice during the night :-( I too have worn a mouth guard but it doesn’t seem to make any difference. 

    Dawn 

    • marla87781
      marla87781 dawn_49415

      Posted

      Dawn, thank you for replying. Do you take medication and if so which one? 

      I just started gabapentin about a month ago at 300 mg and last week doubled to 600 mg.  Hasn’t helped. 

    • marla87781
      marla87781 dawn_49415

      Posted

      Dawn, do you have any idea why it occurs at night? I spoke to my chiropractor yesterday and she suggested sleeping with my neck in a neutral position. It’s hard to do but I am trying that next. (Neck aligned with body without an arch in your neck)

    • rashine32232
      rashine32232 marla87781

      Posted

      600 mg is nothing! You have to go higher. my pain was relieved for 3 years with 2700mg of Neurontin that's a 900mg pill 6am, 4pm, and 11 pm . Try Carbamazepine first it wo rd ked wonders but I was allergic to it.

  • paula76255
    paula76255 marla87781

    Posted

    Hi Marla 

    I too wake in the night with pain. At the mo I am woken up maybe a dozen times, the pain is always in the same place. It travels from my front tooth right up my nose and it is like a fizzing sharp pain. I wait for it to subside then try and get back to sleep. The last couple of nights I’ve slept with two pillows and the attacks are less frequent, but it’s uncomfortable sleeping at that angle. Maybe try propping yourself up a big higher? Good luck! Paula xx

  • jackie30048
    jackie30048 marla87781

    Posted

    mine started out that way but now I wear a lower splint and an alf appliance on my top all the time and the lower splint only at night.  My headaches went from every 5 days to once a month and not as severe.

     

    • marla87781
      marla87781 jackie30048

      Posted

      Thank you for replying Jackie.  What is this splint that you are referring to and does it help?
    • jackie30048
      jackie30048 marla87781

      Posted

      the lower splint is like a mouth guard built to fit my teeth.  I cannot tell you if it will truly solve the problem but at least the headaches are one a month and not as servere
  • joanne63973
    joanne63973 marla87781

    Posted

    Hi Marla

    I have the opposite.  I have a constant ache that starts mid morning and intensifies during the afternoon and evening.  If I relax it gets better and once I’m asleep it goes away, until the next morning.  I look forward to sleep to be pain free.  

    I hope you get some relief soon.  Take care.

    • christy44311
      christy44311 joanne63973

      Posted

      Hi, Joanne,

      I just read your post and had to reach out, because what you describe sounds exactly like the pain I experience. It’s a constant, aching pain that moves all around my mouth. It feels like a toothache, but after going from dentist to dentist and Endodontist to Endodontist, I’ve been told it’s not a dental issue. My doctors at Penn have diagnosed me with atypical facial pain and I’m on gabapentin 900 mg and 60mg of cymbalta. Any advice would be great. If I have a few good days, I get so excited the pain may be dissipating and I’ll get my life back, but then it returns ....

      Christy 

    • marla87781
      marla87781 joanne63973

      Posted

      Joanne, that sounds awful.  Does anyone know why  this disease starts in the first place?   I was perfectly fine on a vacation and flew home from  a long flight .. bam, the next day when I was putting on my make up, it hit me like a brick over my head.  Was first every 6 months, then 5, 4, 3, ... you get the point.  I feel like there HAS to be a reason!
    • Marty007
      Marty007 marla87781

      Posted

      hi , mine started as painshooting through my face when I cleaned my teeth, with a gradual increase until it was Unbearable and caused my head to jerk almost like a fit . I was told that the coating on a nerve in the face had worn out and was like an electric wire with no cover and the pains shot through my face. When I had the op to cure it they found both an artery and vein were affected and they literally twist themselves up because the pain is transferred from the nerves . At one point I had a huge channel stuck across the inside of my cheek from the pulsating veins . I had my blood vessels glued to stop them twisting and touching the nerves . Sorry this is what I understood at the time , not very clear I know but I just wanted the pain to stop xx

       

  • dawn_49415
    dawn_49415 marla87781

    Posted

    Hi Marla, I take Carbamazepine. Amitriptyline and Baclofen, I am never pain free :-( 
  • jackie30048
    jackie30048 marla87781

    Posted

    I also have tried the Carbamazepine. when I get the pain i take 4 motrin and two balofen every 4 hours and it takes me three doses of this to get over the pain.  The next morning you feel drunk and fuzzy but at least the pain gone and by late afternoon you are back to yourself.  I am checking with my doctor on the MVD surgery to see if this is an option for me.
  • gnm109
    gnm109 marla87781

    Posted

    My sympathies to all those who are afflicted with trigeminal neuralgia.(TN) I was first afflicted with TN in 1983. I was driving on a freeway and had an attack so severe that I had to pull off the road and park for about ten minutes. This was on the right side of my face - a burning, searing pain that lasted for some three minutes. After much study of the materials available at that time, I went to a doctor and was diagnosed with TN. He started me on carbamazepene (Tegretol) in 200 mg tablets. At first, a half tablet would stop the pain for two to three months. After a while, it took a whole tablet. I suffered for some 15 years until I had become habituated to the Tegretol and it required 10 tablets a day (2000mg) to even partially suppress it.

    My health carrier was uninterested in assisting me since they were mainly a profit center for a larger company and they typically denied major operations.

    With some further research on the Internet, which was then becoming much better, I discovered another health carrier that did operations for TN sufferers. Since I was able to change, I moved my family health care to the new carrier.

    Soon after changing, i was further diagnosed with a typical, textbook case of TN. That is, one where the pain is cause solely by a mechanical interference between a cranial artery and the 5th cranial nerve on the right side (trigeminal nerve.) I was told that a typical case has no other cause, such as MS or other nerve involvement that could be causing the problem.

    I was scheduled in early 1998 at the new health carrier's hospital for an operation, Microvascular Decompression (MVD). This is an invasive procedure where the neurosurgeon must open the skull and seek out the location where the nerve is being impinged upon. He did so and successfully repaired the problem and I recovered successfully.

    After the second day, all symptoms and pain were gone, and some 20 years later, I have had no further pain and no medication is required, although it took several months to wean myself from the Tegretol.

    This may not be the route for all TN sufferers. You should find a doctor who understands TN and determine the best course of action. In the meantime, proper medication can go a long way toward alleviating the problem.

    Regards to all.

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