cfids and trigeminal neuralgia

Discussion in 'Fibromyalgia Main Forum' started by acupuncture, Mar 9, 2003.

  1. acupuncture

    acupuncture New Member

    Hi- I'm an acupuncturist with CFIDS and trigmeminal neuralgia? Anyone else out there? Also, Has anyone tried hyperbaric oxygen treatments for CFIDS, fibro etc. Thanks. I have been reading this message board for a few weeks and find it very helpful. If you have any questions about Oriental medicine please ask.
  2. 2girls

    2girls New Member

    Yes , I have been diagnosed with Trigmeminal neuralgia along with FM (although I think FM & CFIDS are one and the same). Have'nt tried hyperbaric oxygen but would love to know more about it if you have a minute.
    Thanks
    2girls
  3. acupuncture

    acupuncture New Member

    Hi- Glad I'm not the only one. Although I wouldn't wish the pain on anyone. I am actually going to try this upper cervical chiropractic method before hyperbaric. One of the chiro's is near me in San Diego. I'll let you know how it goes. I have lost 7 teeth trying to get a handle on the TN. I can handle the CFIDS, but when the TN flares up as it has been the past few months it is hard to cope with both. About hyperbaric. My doc recommended it. And I researched it a bit. Seems it has the potential to help the TN and some of the s/s of CFIDS/Fibro, especially those of us with active viruses. The high level of oxygen helps to kill off the viruses. I'm waiting for 2 reasons. Treatment is very expensive and may take some time to show improvement. Also, I'm starting some other treatments for the CFIDS(whey protein, B12 etc) and want to see how those work first. But I'm a bit desperate about the TN pain so I'll start with the chiro. and see where that takes me. What have you done for your TN and CFIDS? I'd like to hear more about your situation. I am finding this message board a great source of support
  4. 2girls

    2girls New Member

    Diagnosed with TN last Feb/02. It was actually an ER doc who diagnosed it - was in excrutiating pain. Felt like my head/face was coming off! It is nasty isn't it? Gave me a shot (Not sure what it was) and a script for Neurontin (2weeks supply). I have not had a serious TN flare in a long time and take nothing for it. I do massage therapy on a regular basis (every 2 weeks). As for meds, only take Ativan for sleep but not every night. I do take plenty of supplements:
    Olive leaf extract
    grapefruit seed extract
    Calcium
    Magnesium
    garlic
    Vit A,B,C,D,E

    I also have TMJ which acts up alot lately. I clench my teeth at night (I don't do this consciously) and my back teeth are so sore. How did the TN affect your teeth loss? I am very curious since mine are very sore (feels like they are pulling apart).
    2girls
  5. acupuncture

    acupuncture New Member

    I'm glad your pain has been quiet. Mine started with root canals. The pain would get worse AFTER the root canal so I'd have the tooth pulled. Then the pain would just move to the next tooth. It seems few dentists know and understand the neuralgia problems. Anyway, this went on for some months and then quieted down. Then it started on the other side of my mouth. My pain seems to come after I've had some kind of dental work. I also seem to have a number of teeth that died. Weird as that sounds! i have read that people with MS often start out with TN on both sides of the mouth. Fortunately, I don't have MS symptoms.But of my health problems came after my initial teeth problems with the root canals. That's why I was wondering if there were others like me. I had almost 8 years without any pain. Then had more dental work and now it's back worse then ever. It doesn't sound like your situation is worsening (hopefully). Have you tried acupuncture for your TMJ? I'm not practicing now but I did treat a fair number of patients with TMJ successfully. Just a thought.
  6. Tattoopixie

    Tattoopixie New Member

    I have had TMJ since '93 & had a tumor removed from my chin in '94.
    Then in 2001 the TMJ acted up again & my chin swelled again & dr went in (2002)& removed built up scar tissue that he thought was causing this, but now the TMJ is back AGAIN & my chin is hurting too.
    After the first surgery I have had 2 root canals done on my lower front teeth as they thought maybe those teeth caused the tumor to form in the first place, but I guess not.
    I thought TM was facial pain, not jaw/tooth pain- have I misunderstood this?
    Thanks,
    ***Pixie***
  7. acupuncture

    acupuncture New Member

    Hi - Sorry to hear about your tumor. I certainly can't feel sorry for myself when I read how much others are experiencing. TN is usually a problem with the trigeminal nerve. However, it can feel like tooth pain. A tooth actually hurts but it's not the real problem. Hard to diagnose. That's why I lost so many teeth. I also seem to have a reaction to root canals that causes pain. Hope that clarifies the difference. By the time I write a response to a post I sometimes forget what the question was......I guess this is from brain fog. I'm taking Neurontin for the pain and it definitely affects my short term memory. But it helps the pain so it's worth the price!