How to Handle Life With Trigeminal Neuralgia

Last Updated: August 30, 2021 Approved

Trigeminal Neuralgia (TN) is called " the worst pain known to mankind & the suicide disorder" by Medical Science. It causes severe unrelenting facial & head pain. ^{[1]
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Steps

REST, RELAX , PRAY ! Find a comfortable place to be where you feel safe. Do not be alone! Use a speakerphone to talk to others, or visit support sites online. If you get to visit with a fellow patient, you will feel so much better. Experienced fellow sufferers are an invaluable source of info. Plus they really can relate to what you are going through!
Visit www.facepain.org This invaluable Web site of the Trigeminal Neuralgia Association deals with many facial and head pain syndromes. ^{[2]
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Research source} They will reply to you very quickly with real practical help by phone or mail or email. You can also get medical abstracts from them to take to the doctor with ideas you may not have tried. Remember we are all unique, what works for one person might not work for another so keep on researching. They also have a great book called "STRIKE BACK" all about TN and other head and facial neuralgia.

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When you go to your first appointment ask how many Facial Pain Patients this doctor treats. Chances are, the more patients, the more this doctor knows. IF they treat you with disdain, or are not patient to listen to your needs then FIND ANOTHER DOCTOR. MANY Of us have had a LOT of doctors, the website above is helpful to find really good doctors in your location.
That is when the Trigeminal Nerve is pinched by an offending artery or other part of the body. There is surgery that can put small "pillows" of teflon between the nerve and the offending problem and bring relief. IF you have had this condition less than 2 -3 years you have a high success rate. ^{[3]
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Being in pain can cause you to forget important details. How to do this? Write down the history of the disorder, when the first attack came, what precipitated it. Write down all medications you have been on, All the drugs you are taking, as well as herbs and vitamins. Add the names and contact info on all doctors as well as your closest contact person, such as your spouse. Be specific on surgeries and any strange symptoms.
Take Magnesium, 400 mg a day, this prevents spasms. ^{[4]
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Research source} B complex, especially B-12, is very important for normal nerve function. ^{[5]
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Research source} It is hard to eat properly sometimes with this affliction so you need very good multivitamin and minerals daily! Try to eat very live foods like greens, a good way to remember is to eat the rainbow!( a colorful diet) Vitamin D will help with exhaustion. If you make shakes, do not drink them ice cold, this can trigger an attack. Use OTC numbing agents for any oral cuts or cold sores, pain in the mouth can trigger attacks.
This is a cumulative treatment and in time you won't need to do it so much. Try it for at least 3 weeks in prescribed physical therapy to see if it will work before you invest in a device to use at home. ^{[6]
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Avoid drafts, especially cold drafts. Keep your face covered with a gentle warm breeze-proof scarf in cold or breezy weather. Wear a pin on your blouse to remind loved ones to avoid that side of your face. Keep some instant warm packs in your purse or pocket. This will help you if you get a sudden chill on your face. Apply the heat through a scarf to keep your face more comfortable. ^{[7]
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This is a type of chemical denervation that will help you have relief. The nerve will grow the covering back so you need to have it done every few months. ^{[8]
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Mayo Clinic
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Hit pain at the start & Keep your prescription medication with you at all times, do not wait to go into a severe attack before you medicate, it takes a great deal more medication to stop an attack then to prevent one.
Roll a a hand towel up and try this under your neck instead of a pillow. Keep your head and face covered during sleep. Try not to sleep on the affected side as that will worsen pain in the morning. Hot tubs can be wonderful for pain management. ^{[9]
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Draw, Paint, Sing, journal, daydream and keep your mind busy, read and get absorbed in whatever you find enjoyable. If you enjoy doing something, you will get into a good time of concentration and you will see that you can have some wonderful relief. ^{[10]
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HOW DID I GET THIS? Many have gotten this disorder after a root canal. If this is the case, I beg you to NOT get your teeth extracted! Many have sadly discovered that when the teeth were pulled the pain is still there. The pain comes from the Cranial Nerve called the Trigeminal Nerve, if you pull your teeth out, the pain will NOT stop because the nerve is still there! If you had a severe infection, make sure you were medicated with antibiotics because the infection from the abscess can move on to other branches of the nerve. Some of the population got this because of Multiple Sclerosis. ^{[11]
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Research source} Please again, get checked out by your doctor. Sometimes, we do not know why this happens and there have even been documented cases of babies with the disorder. Many times TN will begin after age 50 and will start with a dull constant pain. Again, PLEASE Speak to your Doctor to get an accurate diagnosis and proper care.

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What is considered as chronic pain?

David Schechter, MD
Family Medicine Practitioner
Dr. David Schechter is a physician in Culver City, California. With over 25 years of experience as a family and sports medicine physician, Dr. Schechter specializes in mind-body medicine, preventive medicine, and chronic pain. Dr. Schechter received his MD from New York University and is an attending physician at Cedars-Sinai Medical Center. He was named a Top Doctor by Los Angeles Magazine and Men's Health Magazine. He has also written several books, including The MindBody Workbook.

David Schechter, MD

Family Medicine Practitioner

Expert Answer

Chronic pain is pain that persists or lasts for more than three to six months, and the doctor's goal is to try to find out if there is a clear structural, biochemical, or anatomical cause for the pain. Sometimes chronic pain is a pain that is represented by neural pathways, nerve circuits in the brain and the rest of the body that don't really need to be there anymore. So it sometimes is a lingering pain without a structural cause, which can be very confusing to both doctors and patients.

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Tips

Communication within your circle of family and friends is very important. When you are better, give them extra attention for the time they give to you. Show love.

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Travel by plane can increase your pain as can other hard vibrations and fumes. Rest in advance of travel as well as when you get to your destination.

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HAVE GOOD COMMUNICATION BETWEEN YOU AND ALL DOCTORS, make sure they ALL have the same correct information.Be the center hub of the wheel of your care. Do not assume they all have the right info.
- Make a place to rest and relax in your home, a gentle place with quiet music that you can darken easily in a crisis because Bright Lights can make the pain worse. Make sure the room is warm and cozy with a comfy chair or bed and no drafts.
- When you have a remission, don't overdo it, pace yourself.Enjoy every minute of your life with joy.
- Get enough sleep, exhaustion makes attacks much worse.
- Get a group of supportive friends and family if you do not know anyone else with this disorder that you can count on. You most likely will need someone you can call even at 2 am to help talk you through or pray you through an attack. When you have it a long time, Family can get burned out so an alternate person is helpful. Use a speaker phone so you won't be touching your face during an attack when you are talking on the phone.
- Keep soft foods on hand for attacks, sometimes it is hard to chew normal foods during episodes. Rooibos tea from Africa has some healing properties for head pain and it works for some.
- Keep your teeth in Good shape. Many of us have lost teeth, or had poor dental hygiene due to pain. Get a great dentist who understands TN and He can help guide you.
- If you are having a hard time getting a good diagnosis, visit an OroFacial Cranial Specialist and a Pain Clinic.
- Keep depression at bay by staying close to friend, family and enjoyable activities.
- Pain is exhausting so learn to know what triggers your pain, so you can pace your life.
- Most doctors DO approve of narcotics for this disorder in resistant cases where the anti -seizure and other pain preventing meds and procedures do not work. If you do not have an understanding doctor, FIND ANOTHER ONE who will make your life more livable! Morphine and other narcotics can be used successfully to give you a normal life! Remember, if you are suffering in INTRACTABLE pain, narcotic use will help you to be NORMAL, not comatose! That is one sign that is used, if you can function well, you need the pain medication. If you are out of it, you most likely do NOT need that much medication. In a crisis go to the Emergency room armed with your plan of action for crisis and letter from your neurologist about your condition. This is most important when you travel.
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Warnings

Suicide Warning! REMEMBER THIS DISORDER WON'T KILL YOU BUT IT MAY WANT YOU TO GIVE UP AND DIE. FIGHT TO LIVE AND GET YOUR MEDICAL TEAM AND FAMILY TO HELP YOU IN ADVANCE. Get a plan ready for a crisis. Keep your medications up to proper levels, and don't skip your meds! Keep ALL guns, dangerous knives, anything you could use to try to commit suicide OUT of your House. ALWAYS have someone to call when you are in a terrible attack.
- Do not let the doctors do destructive techniques on the Trigeminal nerve until you have exhausted all other methods of treatment!
- Do not self medicate. This disorder needs an overseeing team of doctors. You can overdose on Over the Counter Pain meds! They normally do not help this condition so don't use them unless your doctor tells you to. OTC meds for pain can cause a REBOUND Headache if used daily, not to mention damage to vital organs.
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Things You'll Need

Warm clothing for windy, drafty, breezy conditions, always keep a scarf nearby.
A Support system you can call at any time of day.
Hope
Understanding Medical care

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How to Handle Life With Trigeminal Neuralgia

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