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What has helped against your trigeminal neuralgia?

Discussion in 'Peripheral Neuropathy' started by tiredlight, May 25, 2012.

  1. tiredlight

    tiredlight

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    Unfortunately I have developed atypical trigeminal neuralgia. Constant nerve in my upper face, triggered by using my eyes (reading, watching TV or looking at a computer screen) but also by sound. Ouch.

    I would love to hear from others who found something against this.
     
  2. Carrie-Louise

    Carrie-Louise

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    ! used to get this terribly - I totally sympathise. I used to find hot water bottles or heat pads helped - and also sipping hot water and letting it bathe the inside of the cheek on the affected side. Gentle head massage too sometimes.
     
  3. Gavman

    Gavman Senior Member

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    I never got the twitching but B2 helped my sound/light sensitivity. Worth giving it a crack.
     
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    anticonvulsants like neurontin and lyrica are used for these types of conditions.
     
  5. Crux

    Crux Senior Member

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    B12 healed my TN. I've had both typical and atypical types. With B12 deficiency, nerves can express this in the strangest ways.

    In addition to B12, nerves need support with minerals such as, magnesium, potassium, zinc,etc. Good fats along with lecithin are also needed to rebuild myelin. But for me, B12 was most effective.
     
  6. tiredlight

    tiredlight

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    Thanks, b-vitamins and heat pads seem like good ideas.

    Crux, in which form (oral, iv, sublingual) and dose did you take b12? did a blood test confirm a deficieny or did you just use it regardless to levels? Cos when I test for b12 i already have high levels.
     
  7. Crux

    Crux Senior Member

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    Hi Tiredlight ;

    I now take a sublingual methyl-B12, 5mg. daily. For now it's my maintenance dose. When I had a flare-up a little over a year ago, I had been taking much less, skipping many days. From that I learned I needed a daily supplement.

    What finally clued me into the fact that I had a B12 deficiency was that I had enlarged RBC, shown on a CBC as a high MCV and MCH. By the time I had serum B12 measured, it was above the lab's range. Now it's above 3000 pg/ml.

    Now I go by symptoms rather than numbers, because the numbers, in this case, don't indicate the dosage that I need to stave off the neuralgia/ neuropathy.

    I feel fortunate that I only need a 5 mg. sub. Many people need much more than this, and they also may need injections to better absorb B12. When there is nerve injury in and around the mouth, some people find they are sensitive to sublinguals. (citric acid content). I was sensitve for a time, but the nerves around my mouth,jaw,head have healed and the subs. no longer irritate.
     
    Gavman likes this.
  8. tiredlight

    tiredlight

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    Great info, thanks.
     
  9. Wonko

    Wonko Senior Member

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    10mg atenatolol plus about 50mg amitryptaline (I'm intolerant of tegratol) as soon as it starts up, if you dont treat it immediately it requires more ami, much more.

    Both of these drugs can cause significant, possibly major, issues for pwME but, at least IMO, significantly less than tryign to 'live' with the hell of untreated neuralgia.

    Hope you get on top if it soon, sorry about the spelling.
     
  10. tiredlight

    tiredlight

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    Thanks. Why atenatolol? Just read that its usually used for heart diseases.
     
  11. dsdmom

    dsdmom Senior Member

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  12. Wonko

    Wonko Senior Member

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    Suposition - Atenolol reduces the action of adrenaline which is why it is used to control BP and heart rate (less beats per minute and reduced beat pressure). Adrenaline in most cases helps to combat pain, however, at least in my experience, it makes neuralgia much worse.

    The combination doesnt remove the sensations, it simply makes them not register as pain.
     
  13. tiredlight

    tiredlight

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    Thanks Wonko.

    Great the laser therapy helps you, dsdmom.

    One doc told me he would only recommend that to old people because it damages the nerve. But then again if it takes the pain propably its worth it.

    I hope I get the sublingual methyl-B12 soon I already ordered.
     
  14. dsdmom

    dsdmom Senior Member

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    Tiredlight
    I wonder where that doc got his info. All research I have seen discusses how low level laser actually regenerates nerves. I'd do some research into it if it interests you.I've had significant improvement and am not yet done w treatment. Good luck!!
     
  15. Wayne

    Wayne Senior Member

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    Here's a 5-Minute YouTube Video on how a nutritional supplement helped a man with TN.
     
  16. Timothy D. Reed

    Timothy D. Reed

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    I’ve been a practicing neurologist for the past 17 years and the most terrible stories that I’ve ever heard were about TN. Most of my patients that suffered from TN were hopeless and desperate. I’ve prescribed thousands of medications: carbamazepine, pregabalin, oxcarbazepine,topiramat and sent to surgery about 100 patients in the past years, most of which are women. These surgeries are horrible and I’ve always tried to help them with other methods such as acupuncture, steroid injections and lidocaine infusions. About 4 years ago I participated in a neurology conference in London, there I’ve heard about NanoVibronix and Pain Shield. I got back to Utah and forgot about Pain Shield. Approximately 2.5 years ago, an old lady approached me with TN. She suffered from dementia and obviously couldn’t get surgery. Then I contacted my British colleague that told me about Pain Shield. Two weeks later, I got the device and urged her family to start using it. I’ve guided her caregiver to come back and see me after two weeks of treatment. I was amazed, absolutely shocked. The old lady herself told me that she is feeling relived and can move her face easily. From that point, before prescribing any medications, I recommend to all of my TN patients to use Pain Shield.
     
    Wayne likes this.
  17. justpat

    justpat

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    B12. My daughter had this type of pain for 3 years. She has pernicious anaemia and was on standard maintenance dosage of monthly injections of cyanocobalamin. Eventually her doctor agreed to increasing injections and showed her how to self inject. Three months of twice weekly injections got rid of the pain and it hasn't returned. There are research articles that link low B12 to Trigeminal Neuralgia.
     

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