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Trigeminal neuralgia

Discussion in 'Medical Marijuana Usage and Applications' started by Volcano South, Nov 4, 2009.

  1. Figured I'd start a thread for this condition.

    Does anyone have it? What are your experiences with it?
  2. My wife suffers from TN and MS. MMJ is the only treatment she can tolerate for the face pain she suffers from. Shes tried Tegretol, Baclofen, Dilantin and Neurontin. The side effects from these drugs flat wipe her out.

    We've found that the best way to control the pain from the TN is to take canna-caps and tinctures, along with vaporizing/smoking. The caps and tinctures give long lasting/deep relief while the vape/smoke is immediate.

    Her TN comes and goes........she can have 3-4 good days with no seizures (pain comes on like a seizure/tic), then she will have unbearable pain on and off for days/weeks. She likens the pain to dental pain, as if her teeth are getting drilled on with no anesthesia.

    The trigeminal nerves (three pair) terminate in three areas, the jaw, nose, and behind the eye. When her TN is acting up, the pain can come from any one of the three spots.

    If you, or one of your loved ones is suffering form TN....my heart goes out to you......it is such a debilitating disease........the pain can almost floor you. Thank God my state allows MMJ......I've been her care provider for 4 years now, and we are just this past year figuring out the tinctures and the capsules......they are a great management tool.

    I'm glad you made a thread about this little known and even more little talked about condition.......perhaps it will help others afflicted with it.

  3. #3 Volcano South, Nov 5, 2009
    Last edited by a moderator: Nov 5, 2009
    I got an MRI today to determine if I have TN.

    I began experiencing mouth pain last week, full X-ray was ordered and came back normal. Doctor suspects it may be TN. Luckily, I have a TN surgery center LITERALLY 10 miles away. They have one of the 80%+ success rate machines.

    The pain felt like my tooth was compressing itself and the tooth would shatter at any moment. I didn't have any trauma (dental accident, food issue) before the pain began. The pain ripped through vicodin like a hot knife through butter.

    I was fucked up on the Vicodin (itchy, etc) but the pain was still at 90-100%. It was sad.

    I slept less than 10 hours Friday, Satuday and Sunday nights combined. The ER was no help. My only relief came from 5 shots in the mouth Monday morning from my dentist. I was almost histerical from the pain and lack of sleep.

    Since the shots (which wore off 36-40 hours ago) my pain has been much less and the Demerol affored me 10 hours of sleep last night, 8 of which were consecutive.

    I am lucky my doctor knew of TN as I understand early diagnosis is key.

    I have but one question for you, can I combine MMJ and tegretol?
    Did your wife? I called a pharmacy in Colorado and California and both pharmacists told me it should be A-OK.

    The side effects from the tegretol (I'm taking EPITOL, but it's the same thing) scare me....to say the least.
  4. My ex has TN, and MMJ has really helped her out. I believe she only took Tegetrol during a flareup. Her flareups are mostly related to contact in that general area.

    Of course, MMJ didn't help her with being a 1st class bee-yotch.
  5. After about three or four days on Tegretol, she was getting rashes breaking out on her arms. The doctor said for her to quit taking it. She was taking Carbatrol, which is an extended release form I believe. She hadn't tried the MMJ at that time.

    Shes been dealing with it since 2000.........she refuses surgery because she read about someone's face looking like a "Bassett Hound", due to the severance of the nerve. Women and their vanity.......

    In answer to your question though.......I don't think it will hurt to use MMJ along with your Tegretol. I'm not a doctor, but MMJ has never interfered with any of my wife's Rx meds, and she has been on several.

    Are you able to grow your own MJ? Are you in an MMJ state? If so, you should look into and try a tincture. They're easy to make if you have the plant matter to start with.

    Hope you get your pain under control......and for what it's worth.......it's worse at the onset...I don't know if you get used to it, or if the pain softens a bit........I think in my wife's case, MMJ has helped her to deal with it.
  6. No, I cannot grow my own (lack of owned property)
    No, I cannot use marijuana legally (lack of friendly laws)

    Thanks for your help though. I haven't seemed to have any issues with tegretol and MMJ..yet.

    Who does your wife talk to? Support groups? Online forums? Therapists? I need someone to talk to right now and it's really hard :\
  7. After my MRI results came back good, I was diagnosed with TN.


    Here begins my life long battle with nerve pain.

  8. After seein your thread on strains this morning,I was talking to my wife about your recent diagnosis, and she wanted me to tell you that the initial onset was the hardest for her to deal with. The severity of the pain was so uncontrollable that she was near hysteria too.

    She wants me to let you know that in her case, the pain was like yours, a level 8-10. The other thing she wanted me to tell you is that she got some acupuncture 5 years ago, and it stopped the pain from being so severe.

    She got a hold of a professor of acupuncture (he was Chinese) at a local acupuncture college, and with 2 treatments had the longest stretch free of pain since diagnosis. Her current tics are now just a sharp flash or jab of pain, rather than the long, grueling bouts you are experiencing now.

    If you can find an acupuncturist in your area, consult with him/her, and see if they have any experience with TN.......then ask for references. When I told my wife of your plight, she could totally relate, and sends her best regards.

    We didn't post on any online forums, but there are several out there....we did read a lot of them...........take care, chunk
  9. Just adding that I have axonal neuropathy and accupuncture has helped greatly (in the past, when I lived near civilization)
  10. #10 Scooterpilot, Nov 21, 2009
    Last edited by a moderator: Nov 21, 2009
    Let me say my heart goes out to anyone who has Trigeminal neuralgia. While growing up in the late 50's 60's, my father had TN. Back then they had a lot less information on the illness than they have today. I remember the drugs prescribed to my Dad and nothing worked for him unless it knocked him out. This went on for years, then someone, I don't recall who, recommended acupuncture. He went to three secessions and it didn't work but he still wanted to try a few more secession because he was getting nowhere with the MD's, especially since he had drastic surgery and had all the nerves in his face cut thinking that that would stop the pain and it didn't. He continued with the acupuncture. After the fourth secession the pain stopped for about two months and then he had another bout with TN. He immediately started a regular scheduled secession with his acupuncture. He never had another painful encounter with TN after that!

  11. I'm doing well on the tegretol (epitol/carbamazepam) and occasional demerol.

    I have not had an attack in a few days but I still have localized tooth sensitivity on one tooth (cold triggers an attack)

    Confused because my doctor is sure I have TN (as my dentist has said "nothing wrong here!") but I am still not convinced.

    Confused and scared but....relatively pain free. Plan to stop taking the tegretol when my life calms down a bit.
  12. I'd be wary of the dentist......I've read several accounts of TN happening during/after dental work. When the wife has to go to the dentist, she has borderline panic attacks just fearing a recurrence of her earlier symptoms/pain.

    I'm glad that you've gotten some control over your TN Volcano.......when we first spoke, you seemed so overwhelmed..........best of luck to you with your treatment.......

  13. Thanks again for your words.

    TN was, as you've said, initially hard to deal with. I didn't know how I would be able to plan for the future and live day to day with intense pain. Luckily, as I've said, the pain has gone down quite a bit.

    I do not plan to have dental work done unless absolutely necessary. Sadly, I still have all 4 wisdom teeth but they do not yet cause a problem. Ask me in 10 years, though.

    I hope your wife is able to get the relief she seeks. This is a strange condition to try to describe to regular folks.
  14. crazy that i found a thread about this.

    my mom actually suffers from this.she cant even chew or anything.it really is sad to see her in so much pain.the once lively woman she once was has turned into a woman who is in bed all the time listening to soothing music.oo and doped up on nerve blockers. we live in texas an wouldnt you know it our state is to ignorant to pass a medical marijauana bill.

    can i sue the state over this?
  15. I ran " trigeminal" through my new list and came up with these-

    Anandamide Is Able to Inhibit Trigeminal Neurons Using an in Vivo Model of Trigeminovascular-Mediated Nociception (full - 2004)
    Anandamide Is Able to Inhibit Trigeminal Neurons Using an in Vivo Model of Trigeminovascular-Mediated Nociception

    Cannabinoid (CB1) Receptor Activation Inhibits Trigeminovascular Neurons
    (full - 2006)
    Cannabinoid (CB1) Receptor Activation Inhibits Trigeminovascular Neurons

    Anandamide (an endocannabinoid your body makes) and THC both activate the CB1 receptors. They can do the same "jobs". Nociception just means pain.

    Hope that helps-

    Granny :wave:
  16. I need to find a strain (or different strains) which can help me with chronic neuropathic pain...?

    All advice is welcome...
  17. How did your MVD go??
  18. The MVD operation was OK. It was the best option for me, and has helped me stop taking the Tegretol, Lyrica and Tylenol III pharmaceuticals prescribed by my neurologist. I could not function on the pills. I am still getting breakthrough TN flares when I am overactive and get heated-up, but that's to be expected.

    If you're healthy and your Doctors are recommending the MVD surgery, then it's worth thinking about - and do everything you can to get off the pharmaceuticals.
  19. I'm currently on Klonopin (mods: this is NOT "other drug" discussion, PM Rummy for clarification) 1mg/nightly and it helps. I don't take it every night but I can't tolerate Tegretol or Neurontin and I can't afford Lyrica since it's brand.

    I'd love to get an MVD but I'm told I can't because my case is atypical. I don't get the flares like you do, I have a constant, dull ache that sometimes turns into pain.

    Where is your TN located? Mine's in the V3 branch in ONE TOOTH

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