Striking Back! The Trigeminal Neuralgia and Face Pain Handbook

Table of Contents

FORWARD by Peter J. Jannetta, M.D.

PREFACE by George Weigel

PREFACE by Kenneth Casey, M.D.

ACKNOWLEDGMENTS

1: LIKE A LIGHTNING BOLT

• Not just an aging disorder

• When TN first appears (chart)

• How the pain behaves

• TN snapshot (chart)

• A quick TN anatomy lesson

• What trigeminal nerves do

• A TN history lesson

• Trigeminal neuralgia in a classic (box)

• From blood-letting to boiling water

• Surgical break-throughs

• Treating it with medicines

2: JUST WHAT IS TN ANYWAY?

• Where and how TN strikes

• How people react to TN pain

• How a TN patient appears to others (box)

• That unforgettable first attack

• A warm-up for the real thing

• Diagnosis difficulty

• Unnecessary treatments

• Education and awareness

• Diagnosing by description

• 10 tips on getting a speedy, accurate face-pain diagnosis (box)

• Ruling out other problems

• Tests that doctors often do

• Changes in sensation?

• A family connection?

• Kids with TN

3: WHAT’S CAUSING THIS TERRIBLE PAIN?

• How nerves work

• The road to the brain

• A sample impulse

• Like a phone cable

• The trigeminal nerve’s duty

• The 12 pairs of cranial nerves (box)

• What’s going wrong

• “Irritable” nerves

• The remission cycles

• The suspected role of aging

• Compressions of all kinds

• Problems with compressed other nerves (box)

• Is it always a compression?

• Tumors and cysts

• The “AAA” of anatomy problems

• Some other things that could be causing TN

4: TN OR NOT TN?

• It must be “atypical?”

• Sorting out the “atypicals”

• A variation on the TN theme?

• What’s injured… and for how long?

• When do variations become something else?

• Changing the names

• TN-1 and TN-2

• Trigeminal neuropathic pain

• Trigeminal deafferentation pain

• Post-herpetic neuralgia

• Symptomatic trigeminal neuralgia

• Atypical facial pain

5: THE DENTAL CONNECTION

• How tooth pain factors in

• Flushing out tooth problems

• The “straw that broke the camel’s back”

• New pain but not TN

• Dental pain and TN

• Dental problems to consider

• The “bony-cavity” theory

• How NICO happens

• The other side of NICO

• Fillings as triggers?

• Dental care with TN

• Going to the dentist

6: OTHER FACE PAINS: NOT TN, NOT DENTAL, BUT IT STILL HURTS

• Cluster headache

• Cluster tic syndrome

• Migraines and facial migraines

• Trigeminal neuritis

• Lyme disease

• Glossopharyngeal neuralgia

• Geniculate neuralgia

• Occipital neuralgia

• Vagal/superior laryngeal neuralgia

• Sphenopalatine neuralgia

• SUNCT

• Temporomandibular disorders

• Myofascial pain

• Temporal arteritis

• Sinusitis

• Chronic paroxysmal hemicrania

• Raeder’s paratrigeminal syndrome

• Orbital myositis

• Tolosa-Hunt syndrome

• Lupus and Sjogren’s syndrome

• Atypical odontalgia

• Burning mouth syndrome

• The many faces of face pain (chart)

7: MEDICATIONS FOR FACE PAIN

• Anticonvulsants: Still the main type

• What usually doesn’t work

• Finding better anticonvulsants

• Beyond anticonvulsants

• No “just-for-TN” drug

• The path to medication

• Medication’s role in TN

• Picking the “right” medicine

• Conflicts with other medicines, conditions

• How to take TN medications

• A dosing schedule (chart)

• Allergic reactions

• The right dose

• Questions to ask when taking a new drug (box)

• What if the pain is gone?

• What if the medicine “wears off?”

• Dealing with side effects

• A drug-by-drug rundown

• Carbamazepine (Tegretol, Carbatrol)

• Oxcarbazepine (Trileptal)

• Gabapentin (Neurontin)

• Lamotrigine (Lamictal)

• Topiramate (Topamax)

• Phenytoin (Dilantin)

• Levetiracetam (Keppra)

• Tiagibine (Gabitril)

• Valproate (Depakote, Depakene)

• Zonisamide (Zonegran)

• Amitriptyline (Elavil)

• Imipramine (Norfranil, Tofranil)

• Nortriptyline (Pamelor)

• Venlafaxine (Effexor)

• Baclofen (Lioresal)

• Tizanidine (Zanaflex)

• Pimozide (Orap)

• Clonazepam (Klonopin)

• Opioids

• A look at opioids used for chronic face pain (chart)

• Compounding: Another way to take medicines

• Help paying for TN medications

• Seven ways to hold medication costs (box)

• Pregnancy and TN

• Pregnancy risk ratings of TN drugs (box)

• Comparing the medications used for TN (chart)

• Side effects and interactions of TN medications (chart)

8: IF MEDICINES DON’T HELP

• Choices, choices and more choices

• When is enough enough?

• The case for sooner surgery

• Is there a time window?

• What do patients want? (box)

• CAM options

• Making the surgery decision

• Need more help deciding what to do? (box)

• Wading through the options

• Which kind of surgery?

• Average life expectancies (chart)

• The nature and location of pain

• Complications and recurrence

• Prior procedures?

• Which came first… the surgery or the surgeon?

• Picking a skilled surgeon

• Seeing the cause

• Decisions in “atypical” or TN-2 cases

• Decisions in multiple sclerosis cases

• Decisions in post-herpetic neuralgia cases

• Decisions for trigeminal neuropathic and deafferentation pains

• No two cases alike

• What to do about surprise attacks

• Health insurance and disability issues

• Comparing the five main TN surgeries (chart)

9: RADIOFREQUENCY LESIONING: Fighting Face Pain with Heat

• How it’s done

• Radiofrequency’s role in TN

• Success rates and recurrences

• The possible drawbacks

10: GLYCEROL INJECTIONS: Fighting Face Pain with a Liquid

• How it’s done

• Glycerol’s  role in TN

• Success rates and recurrences

• The possible drawbacks

11: BALLOON COMPRESSION: Fighting Face Pain by Squeezing the Nerve

• How it’s done

• Balloon compression’s role in TN

• Success rates and recurrences

• The possible drawbacks

12: RADIOSURGERY: A No-Incision Surgery Using Radiation

• The Gamma Knife

• Linear accelerators

• How Gamma Knife is done

• How a linac treatment is done

• Radiosurgery’s role in TN

• Differences of radiosurgery

• Success rates and recurrence

• The possible drawbacks

13: MICROVASCULAR DECOMPRESSION: Attacking the root of the problem

• How MVDs are done

• Dealing with the vessels

• MVD’s role in TN

• Success rates

• Pain recurrence

• The possible drawbacks

• Partially cutting the nerve

• A comparative look at surgical success rates (chart)

• A look at potential unwanted effects of surgery (chart)

14: IT STILL HURTS… NOW WHAT?

• Why did surgery fail?

• What if it worked but the pain comes back?

• Why pain might come back

• Surgery repeats

• Which one next?

• Dealing with surgical complications

• Pain and numbness both?

• Other avenues

• “Peripheral” nerve treatments

• Neurectomies

• Chemical injections

• Cryotherapy

• Peripheral radiofrequency

• If all else fails…

• The DREZ procedure

• Deep brain stimulation

• Motor cortex stimulation

15: NOT SURGERY, NOT PILLS: THERAPIES BEYOND MAINSTREAM MEDICINE

• Rising CAM trends?

• Exactly what is CAM?

• CAM’s roots

• Why people are interested in CAM

• Who’s using CAM today

• How to determine if CAM is right for you (box)

• The issue of evidence

• Why there’s little research

• A few other caveats

• Worth trying?

• A closer look at some CAM and other options

• Hot-pepper creams

• Local anesthetics

• Botox injections

• TENS units

• Magnet therapy

• Low-intensity laser therapy

• Massage

• What the labels mean (box)

• Herbal therapy and aromatherapy

• Craniosacral therapy

• Therapeutic Touch/Healing Touch

• Tips on CAM shopping (box)

16: ACUPUNCTURE FOR FACE PAIN

• Understanding acupuncture

• Not always needles

• Finding a balance

• Why else might acupuncture work?

• How well does it work?

• Side effects and drawbacks

• Help finding an acupuncturist (box)

• Acupuncture’s role in TN

17: CHIROPRACTIC FOR FACE PAIN

• The spine and face-pain connection

• Searching for problems

• Fixing the misalignments

• Success rates

• Keeping the pain away

• What patients say

• What doctors say

• Chiropractic’s role in face pain

• How to find an upper-cervical chiropractor (box)

18: NUTRITION THERAPY

• Food links to face pain

• Pain-triggering foods

• Two main routes

• The “healthy-nerve” diet

• Seven guidelines for a healthy diet (box)

• Nerve-related vitamins and minerals

• The role of supplements

• Vitamin B-12 and myelin

• Nutrition-based plans

• The Lemoles’ TN program (chart)

• Other nutrition and lifestyle efforts

• For more information on nutrition and health… (box)

• Success, precautions and limits

• A few tips on supplement shopping… (box)

19: TIPS FROM THE VETERANS

• Cold compresses

• Heat treatments

• Hot creams

• Menthol creams

• Avoid burning eyes

• Gum-numbing gels

• Give the nerve the “cold shoulder”

• Eating tips

• A nerve-calming tea

• Teeth tips

• Chew gum

• Facial massage

• Massage the ears

• Chin adjustment

• Flex the neck

• Clever sleeping strategies

• Get proper rest

• Set the alarm for a nighttime dose of medicine

• Stay away from face-touching activities

• Cover the face outside

• Loosen those glasses

• Cut out nicotine

• Limit other “stressors”

• Prayer

• Strenuous exercise

• Fresh air?

• Keep a “pain diary”

• Play detective

• Prioritize your activities

• Avoid vibrations

• Avoid bright light

• Dry-eye help

• Attitude boosters

20: COPING WITH FACE PAIN

• Lots of exams, no answers

• TN affects more than just the face

• Reacting to the pain

• Fighting the mental battles

• Eight myths of pain (box)

• The depression connection

• “Willing” the pain away?

• You don’t have to “learn to live with it”

• Coping with sudden pain flare-ups (box)

• Relaxation

• Deep breathing exercises (box)

• Progressive muscle relaxation (box)

• Mental imagery

• Hypnosis and self-hypnosis

• How to hypnotize yourself (box)

• Meditation

• How to meditate (box)

• Biofeedback

• Prayer

• Americans’ thoughts on the healing power of prayer (box)

• Humor as therapy

• How to laugh your pain away (box)

21: HELPING PEOPLE WITH FACE PAIN

• Supporters help with coping

• How others react

• “I Don’t Get It” poem

• Hard to understand

• Things that don’t help

• Things that do help

• Walking that fine line

• The effect on children

• An effective doctor

• How to help your TN doctor help you (box)

• The “burden” on caregivers

• A support group for neuralgians

• The beginnings of TNA

• TNA’s purpose (box)

• How to contact the Trigeminal Neuralgia Association (box)

• Support makes a difference

• Finding a TN support group (box)

• Support can add years?

• Support group by Internet

• 18 ways to help a neuralgian in the family (box)

22: POSSIBILITIES

• A new view of pain

• Pain Care Bill of Rights (box)

• What we’re learning about pain

• Regenerating myelin

• Medications just for TN

• Better delivery of the medicine

• New and improved surgery

• MVD advances

• Stimulating the pain away?

• Better imaging

• More TN education

• Lots of hope

23: HELPFUL LISTS, QUESTIONNAIRES AND OTHER AIDS

• Questions to diagnose and treat face pain

• Sorting out the exact face pain you’ve got

• The McGill Pain Questionnaire

• How is pain affecting your life?

• Wong-Baker FACES Pain Rating Scale

• Are you and your doctor on the same page?

• How are you coping with your face pain?

• Measures for depression

• Understanding medical literature

• Navigating for health information online

• 15 points to look for in a good surgical study

• “Thoughts to Myself” poem

• “Do You Know What I Did Today?” poem

• “Tic Douloureux My Darling” song

24: RESOURCES

25: GLOSSARY

REFERENCES

INDEX