Please Help, anyone know about "Tic Douloureux"

Discussion in 'Fibromyalgia Main Forum' started by suzanne, Jun 14, 2003.

  1. suzanne

    suzanne New Member


    I have tried searching about Tic douloureux really no success yet. I don't know if is spelled diffently it sounds like "Tic larue". I can get numbness in the head and side of face. My mother had it and want to know more about it to see if I may have it also along with FMS. it isn't very nice to have eye droops, hard to speak some times but just the feeling and pain. if anyone can help please reply. Soft hugs to all of you!!!!
  2. Applyn59

    Applyn59 New Member

    Hi Sue,
    I found these two articles for you. I have something similar called Sluder's syndrome. It is a rare
    disorder and in combination with nasal spurs
    causes temple headaches, numbess and tingling
    of face, pain, etc. I have had terrible bouts for a few
    months and then good times with no problems.

    Hope this helps.

    Tic Douloureux (Trigeminal Neuralgia)
    * What Is It?
    * Symptoms
    * Diagnosis
    * Expected Duration
    * Prevention
    * Treatment
    * When To Call A Professional
    * Prognosis
    * Additional Info

    What Is It?

    Trigeminal neuralgia (also known as tic douloureux) is a painful disorder of the trigeminal nerve (fifth cranial nerve). The right and left trigeminal nerves — one for each side of the face — are responsible for detecting touch, pain, temperature and pressure sensations in areas of the face between the jaw and forehead.

    Persons who suffer from trigeminal neuralgia typically experience episodes of sudden, intense, "stabbing" or "shock-like" facial pain. This pain may occur almost anywhere between the jaw and forehead, including inside the mouth; however, it is usually limited to one side of the face (either right or left). Painful episodes are often triggered by nonpainful stimuli — such as talking, chewing or tooth brushing — and typically subside within two minutes. In approximately 50 percent of cases, a person with trigeminal neuralgia can identify specific locations (called "trigger points") on the face, where a light touch or a change in temperature causes a painful episode to begin.

    In some cases, the underlying cause of trigeminal neuralgia is unknown. In many patients, however, the disorder seems to be related to a local irritation of the trigeminal nerve, usually in the area of the nerve "root" deep within the skull. In most cases, the source of this irritation is believed to be an abnormal blood vessel that is pressing on the nerve. Less often, the nerve irritation is related to a tumor that involves the brain or nerves or to a rare type of stroke. In addition, up to 8 percent of patients who suffer from multiple sclerosis (MS) eventually develop trigeminal neuralgia as a result of MS-related nerve damage.

    Currently, trigeminal neuralgia strikes five to 16 out of every 100,000 Americans annually and affects women twice as often as men. In most cases, the first episode of facial pain occurs when the patient is 50 to 70 years old, although infants and children also have been diagnosed with the problem. As a rule, the condition is rare in persons younger than age 40.


    Trigeminal neuralgia causes episodes of sudden, intense facial pain that usually last for two minutes or less. In most cases, the pain is described as "excruciating" and its quality is "sharp," "stabbing," "piercing," "burning," "like lightning" or "like an electric shock." In 96 percent of cases, only one side of the face is affected.

    Nonpainful facial movements or stimuli, such as talking, eating, washing the face, brushing the teeth, shaving or touching the face lightly, often trigger episodes of pain. In some cases, even a gentle breeze on the cheek is enough to precipitate an attack. Approximately 50 percent of patients also have specific trigger points or zones on the face — usually located somewhere between the lips and nose — where an episode of trigeminal neuralgia can be triggered by a touch or a temperature change. In some cases, a sensation of tingling or numbness precedes the pain.

    Attacks of trigeminal neuralgia often occur in clusters, with several episodes following in series. For unknown reasons, trigeminal neuralgia almost never occurs at night when the patient is sleeping.

    In addition to pain, some patients also have a cheek twitch, wincing, a facial flush, a tearing eye or salivation on the same side of the face.


    After you describe your symptoms, the doctor reviews your medical history, including any history of MS. To help rule out medical and dental conditions that can mimic trigeminal neuralgia, the doctor also asks whether you have a history of:

    * Recent trauma to your face or teeth
    * A recent tooth infection or root canal
    * A tooth extraction on the same side as your facial pain: sometimes a tooth extraction can cause "phantom pain" in the area of the missing tooth
    * Any areas of painful facial blisters: painful blisters can be a sign that you are suffering from a viral infection involving your facial skin, such as herpes, which is caused by the herpes simplex virus, or shingles, which is caused by varicella zoster, the chickenpox virus. Especially in cases of shingles, facial pain may persist for weeks after the blisters heal.

    Next, your doctor performs a thorough physical examination of your head and neck, including the area inside your mouth. The doctor also performs a brief neurological examination and concentrates on sensation and muscle movements in your face. In almost all cases, the results of these examinations are normal. If necessary, your doctor will order a magnetic resonance imaging (MRI) or computed tomography (CT) scan of your head to check for blood vessel abnormalities, tumors pressing on your trigeminal nerve or other possible causes of your symptoms.

    Finally, after excluding other possible causes for your facial pain, the doctor makes the diagnosis of trigeminal neuralgia based on the following information: symptoms, unremarkable medical and dental history, and normal physical and neurological examinations. Currently, no specific test confirms the diagnosis of trigeminal neuralgia. In some cases, however, the doctor prescribes a brief course of carbamazepine (see Treatment) to determine if this medication relieves the facial pain. If carbamazepine is effective, the diagnosis is almost always trigeminal neuralgia.

    Expected Duration

    In general, trigeminal neuralgia is an unpredictable disorder. For unknown reasons, many patients experience periods when the illness suddenly intensifies and produces repeated painful episodes over the course of several days, weeks or months. This period may be followed by a pain-free interval that can last for months or years.

    If you are treated for trigeminal neuralgia, the type of treatment that you receive influences the duration of your symptoms. Some treatments carry a higher risk of recurrence (return of symptoms) than others.


    In most cases, trigeminal neuralgia cannot be prevented.


    If you have trigeminal neuralgia, the doctor usually begins treatment with carbamazepine. Carbamazepine is an anticonvulsant medication that decreases the "excitability" of the trigeminal nerve, which decreases its ability to fire off the nerve impulses that cause facial pain. If carbamazepine is not effective, other possible drug choices include phenytoin, baclofen, gabapentin, clonazepam and valproic acid. Some of these medications carry the risk of unpleasant side effects, including drowsiness, liver problems, blood disorders, nausea, dizziness, overgrowth of the gums and skin rashes. For this reason, you are monitored with frequent follow-up visits and periodic blood tests. After a few pain-free months, your doctor may attempt to decrease gradually or discontinue the dose of medication. This is done to limit the risk of side effects and determine whether your trigeminal neuralgia has stopped on its own.

    If medication does not stop your pain or if you cannot tolerate the side effects of medication, then your doctor may suggest one of the following treatment options:

    * Rhizolysis (selective destruction of part of the trigeminal nerve) — In this approach, a portion of the trigeminal nerve is inactivated temporarily by using one of the following methods: a heated probe, an injection of the chemical glycerol or a tiny balloon that is inflated near the nerve to compress it. During the procedure a needle or a trocar (tiny hollow tube) is inserted through the skin of your cheek. On average, the effect lasts for one and a half to four years. At that time, the procedure may be repeated, if necessary.
    * Stereotactic radiosurgery — This form of radiation therapy uses a linear accelerator or a gamma knife to inactivate part of the trigeminal nerve. After your head is positioned carefully in a special head frame, many tiny beams of radiation are aimed precisely at the portion of the trigeminal nerve that must be inactivated. Stereotactic radiosurgery is a fairly new treatment option for trigeminal neuralgia, and its long-term success rate is still being evaluated.
    * Microvascular decompression of the trigeminal nerve — In this delicate surgical procedure, a surgeon carefully repositions the blood vessel that is pressing on your trigeminal nerve near your brain. Because this procedure involves opening your skull, you are a good candidate for this procedure if you are generally healthy and relatively young (less than 65 years old). Overall, the success rate is approximately 90 percent, and the effect is usually permanent. In rare cases in which pain does recur, it generally happens approximately 15 years after surgery.

    A warning about treatment mistakes: In rare cases, the pain of trigeminal neuralgia is mistaken for dental pain. Several teeth may be extracted unnecessarily before the real diagnosis is made and proper treatment begins.

    When To Call A Professional

    The pain of trigeminal neuralgia is recognized as one of the most excruciating forms of pain known to humankind. For this reason, you should seek medical help immediately if you develop facial pain that fits the pattern of trigeminal neuralgia. Call your doctor for an emergency office visit or visit a hospital emergency room if your pain develops "after hours."


    In most cases, the prognosis is good. Approximately 80 percent of patients become pain-free with medication alone. When medication fails or produces unwanted side effects, other treatment options are available and have a high rate of success.

    Trigeminal Neuralgia Association
    P.O. Box 340
    603 Broadway
    Barnegat Light, NJ 08006
    Phone: (904) 779-0333

    They have a website called tna-support

    Treatment of Trigeminal Neuralgia at Mayo Clinic in Rochester
    (Synonyms: tic douloureux)

    Trigeminal neuralgia (sometimes called tic douloureux) is characterized by episodes of intense, stabbing, electric-shock like pain in areas of the face where the branches of the trigeminal nerve are distributed — lips, eyes, nose, scalp, forehead, upper jaw and lower jaw.
    The disorder most often affects one side of the face, but some people experience pain at different times on both sides. The condition usually occurs after age 50 and is more common in women.
    The painful attacks can be spontaneous, but they may also be provoked by chewing or changes in temperature and even mild stimulation around the face, including brushing teeth, shaving or putting on makeup.
    For the thousands of people who have trigeminal neuralgia, attacks of such pain are frequent and can often seem unbearable.
    Because of the variety of treatment options available, having trigeminal neuralgia does not necessarily mean a person is doomed to a life of pain. Doctors usually can effectively manage the condition, either with medications or surgery.

    Treatment at Mayo Clinic
    The goal of treatment is to relieve the pain of trigeminal neuralgia while avoiding facial numbness as much as possible, enabling those who have the disease to return to a normal life.
    At Mayo Clinic, specific treatments are determined by a patient's medical team based on:

    * age, overall health and medical history
    * the nature, severity and location of the pain
    * information obtained from imaging tests or scans
    * the cause of the condition
    * a person's tolerance for specific medications, procedures or therapies
    * the patient's opinion or preference

    Medications are the typical initial treatment for trigeminal neuralgia and are often effective in lessening or blocking the pain signals sent to the brain. A number of drugs are available. If a medication loses its effectiveness or causes too many side effects, there is always the potential to switch to another one.
    Should medications become ineffective, or if they produce undesirable side effects, surgical procedures are available to relieve pressure on the nerve or to reduce nerve sensitivity.
    Some people mistake the pain of trigeminal neuralgia for a toothache or a headache. It is not uncommon for people to believe that their facial pain is dental-related, particularly when the pain seems to stem from the gums or is located near a tooth. It is also possible for the brain to interpret the facial pain of trigeminal neuralgia as related to a headache.
    People who experience facial pain, particularly prolonged pain or pain that has not gone away with use of over-the-counter pain relievers, see a dentist or doctor.
    Mayo Clinic has all options for treatment available with dedicated neurologists and neurosurgeons who have years of experience treating this condition.

    Treatment Options
    Basically, three kinds of treatment are available:

    * Medication
    * Surgery
    * Combination of medication and surgery

    Medications used to treat trigeminal neuralgia include:

    * Anticonvulsant drugs
    These are the most common medications used to treat trigeminal neuralgia. In the early stages of the disease, the medication controls pain for the majority of people. However, the effectiveness of the medication may decrease over time. Side effects include dizziness, double vision, sleepiness and nausea.
    Anticonvulsant drugs were originally developed to treat seizures but have been discovered to be very effective in treating trigeminal neuralgia even though trigeminal neuralgia is not connected to seizures.
    * Muscle relaxants
    The effectiveness of muscle relaxants may increase when they are used in combination with anticonvulsant medications. Side effects include confusion, mental depression and severe drowsiness.

    Trigeminal neuralgia often follows a remitting and relapsing course in which some patients get pain, have their pain controlled with medication, and then, after weeks or months, are weaned off the medication and remain pain-free.

    While some people receive adequate pain control with medications only, others with trigeminal neuralgia eventually stop responding to their medications or they experience side effects. For those people, surgery — or a combination of surgery and medications — may be an option.
    The goal of a number of surgical procedures is to either damage or destroy the part of the trigeminal nerve that is the source of the pain. Because the success of these procedures depends on damaging the nerve, one side effect is facial numbness of varying degrees.
    These procedures involve:

    * Alcohol injection
    Alcohol injections under the skin directly around the branches of the trigeminal nerve that supplies the skin of the face may offer temporary relief by numbing the areas for days or months. Because the pain relief is not always permanent, repeated injections may be needed.
    * Glycerol injection
    This procedure is called percutaneous glycerol rhizotomy (PGR); percutaneous means through the skin. A needle is inserted into the trigeminal nerve at the base of the skull where the trigeminal nerve root exits the skull. X-rays are taken to confirm that the needle is in the proper location. Once the location is confirmed, a small amount of sterile glycerol is injected. After three or four hours, the glycerol damages the trigeminal nerve and blocks pain signals.
    Initially, PGR relieves pain in most people. However, many people have a recurrence of pain, and many experience mild facial numbness or tingling.
    * Balloon compression
    In a procedure called percutaneous balloon compression of the trigeminal nerve (PBCTN), a needle is once again inserted through the face and into the hole at the base of the skull where the tirgeminal nerve exits. Then a thin, flexible tube (catheter) with a balloon on the end is threaded through the needle. The balloon is inflated with enough pressure to compress the nerve, thereby blocking the pain signals.
    PBCTN successfully controls pain in most people. Most people undergoing PBCTN experience facial numbness of varying degrees, and more than half experience some nerve damage, resulting in a temporary weakness in the muscles used for chewing.
    * Electric current
    A procedure called percutaneous stereotactic radiofrequency thermal rhizotomy (PSR) selectively destroys nerve fibers associated with pain. A needle is again inserted through the face and into the opening in the skull for the trigeminal nerve. Once the needele is in place, an electrode is threaded through the needle until it rests against the nerve root.
    The position of the electrode is verified by electrically stimulating the trigeminal nerve. Then a current is passed through the tip of the electrode until it is heated to the desired temperature for about 70 seconds. This damages the nerve fibers and creates an area of injury (lesion). If the pain is not eliminated, additional lesions may be created.
    PSR successfully controls pain in most people. A common side effect of this type of treatment is mild to severe facial numbness. The pain may recur after months or years, and repeat procedures may be necessary.
    * Radiation surgery
    Gamma knife radiosurgery (GKR) involves delivering single high doses of radiation to the root of the trigeminal nerve. The radiation damages the trigeminal nerve and eliminates the pain. GKR is successful in eliminating pain more than half of the time. The procedure is painless and typically is done without anesthesia. It may take between three weeks and three months for the pain relief to begin.
    * Microvascular decompression (MVD)
    A procedure called microvascular decompression (MVD) does not damage or destroy part of the trigeminal nerve. Instead, MVD involves relocating or removing blood vessels that have contact with the trigeminal nerve root where it leaves the brain stem.
    The vascular decompression operation is a major surgical procedure done under general anesthesia in the operating room, which commonly requires two to three days in the hospital after surgery. A small incision is made behind the ear. Then, through a small opening made in the skull, the trigeminal nerve is directly inspected with the aid of the operating microscope. If the surgeon sees an artery in contact with the nerve root, he or she directs it away from the nerve and places a small teflon pad between the nerve and the artery to prevent it from coming in contact with the nerve again.
    The majority of patients who have this procedure performed by a qualified neurosurgeon have no facial numbness and are pain-free, requiring no further medications. Usually, the pain relief is instant.
    While MVD has a high success rate, it also carries risks. There are small chances of decreased hearing, facial weakness, facial numbness, double vision and even a stroke or death.

  3. suzanne

    suzanne New Member

    Hi Applyn59:

    thank you so much for such a quick responce and ALL the info you sent. Your incrediable. You made my day with the info. I have had this so a long time and I have never gotten a responce from the docs. They just listen and changed the subject. But maybe just maybe since I was just told I have this DD FMS on June 5 that I have going to docs for for over 2 years now, maybe they will listen to me and BELIEVE ME. My mother had it. The docs did nothing for my mom just said she had to live with it. you were saying you get it also at times. Isn't strange how we can go without it then for no reason at all it just hits. I always told my self I was just stressed and had a headache. But deep down in side I would tell my self this isn't just a plain old headache. When people and docs don't believe you its hard. I started to question my self and told my self its all in my head even thought I felt all the pain. Not being believed makes one start believing it isn't real, but in my heart I knew there was something wrong. Write and tell me a bit about your self if that is Ok with you.
    Got to go, thank you again your such a sweet heart. Soft hugs.
    P.S. your name??
  4. Applyn59

    Applyn59 New Member

    You're welcome! I was very happy to do it for you.
    Only took a couple of minutes. I figured I'd start
    with that and not overload you.

    Isn' t it weird about these symptoms? Mine began when
    I went to the dentist and complained of a toothache. Of course, nothing at all was wrong! The dentist then noticed that I complained of that exact same thing at another time at the same time of year. He suspected
    sinuses. That same week I went to my rheumy/allergist and told him. He said I had a sinus infection. I never had one (that I knew of). I had usual sinus symptoms and was on antibiotics for about three weeks. I never felt any better so he did a cat scan of my sinuses.

    Get this! The CT scan showed that nothing was wrong and that the infection was gone. However, I had lots of facial, teeth and head pain and couldn't rest. I made an appt to see an ear, nose and throat dr. He was the nicest , smartest sweetest dr.

    I brought some papers with me about these types
    of headache disorders. I was worried about temperal
    arteritis. He examined me and told me that I have
    a deviated septum and that I have two nasal spurs!
    I told him the CT scan showed nothing. He arranged
    to get the report. I did tell him that it said nothing was wrong! He said he would go to hospital and look at them.

    Anyway, the way he diagnosed me with Sluder's (which
    there is HARDLY any info at all about) was for me to
    use neosynepherine the next time I had a big attack.
    He said if I was relieved within ten minutes, I had
    Sluder's. Well, I was. However, I had severe headaches to the point of nausea and could only
    use that neosynepherine one or two times a week! I had so much trouble deciding when to use it. I went through many painful times because I was saving it for another time! If you use it more than that you get rebound effects. He didn't think the spurs were causing
    my troubles, which are mostly left-sided. He told me about surgery and I told him I didn't want it because the last surgery I had ruined me. He moved closer to me and stoke my arm with compassion. I really wish he were an FMS dr! We decided to see what would happen and how cyclical it was with season changes.
    That first diagnosis I was really bad for months.
    I have been much better lately. I get the occasional tingling and numbness but it is brief.

    I laughed when I read about brushing your teeth. There
    are three teeth that hurt when I brush them! My don't have the droopy eye stuff or numb head. Lots of times
    I do feel like I was kicked in the side of the head by a horse!!!

    I had recently been put on beta blocker for rapid pulse and I read they sometimes use them help with the pain.

    You asked about me? LOL You don't want to know.

    This is my list that I just put in Ac's survey:

    scoliosis, degenerative disk desease, herniated disks, bone spurs, arthritis, GERD, hiatal hernia,
    Sluder's Syndrome (rare -facial pain, tingling,
    numbness, severe temple headaches); allergies;
    allergic conjuctivitis; nasal spurs; polycystic ovarian
    disease; corded achilles tendonitis; insulin resistance;
    racing heart beat; suspected endometriosis; had
    gallbladder removed; failed back surgery.

    I have basically been bedridden the past year. I felt
    a bit better last week and ventured outdoors to my
    neighbor's hot tub. I was there again today and really
    loved it!!!

    I probably have told you more than you want to know.
    If you have any other info that you want to find online-
    you can ask me. I don't mind getting info for you.

    You probably should see a neurologist, which I did because the ENT was worried and wanted me to have a consult. It took three months to get in and my headache was gone at that point!!!

    Take Care and Welcome to the board!

  5. Applyn59

    Applyn59 New Member

  6. tansy

    tansy New Member

    Hi Sue

    I had this problem for some years so I know how you and Lynn are suffering. I thought it would never go, it happened so often and went on for so long each time.

    Now all I get is a milder form and not that often, it's bearable unless I go out in the rain that can realy hurt espectially if it's cold.

    I couldn't cope with the meds I was given for this, they just made it impossible to function. I really can't tell you why it eased down so much but clearly whatever caused it is less of a problem now.

    Hope you too get some relief soon.



  7. KayL

    KayL New Member

    suffered with this, but I never understood exactly what it was until this post. I just remember it caused her a LOT of pain, but I think she didn't have a clear understanding of it to explain it to me. Sounds awful - I feel for anyone who has that to contend with too.

  8. stillafreemind

    stillafreemind New Member

    Sorry you are suffering with this. Funny thing..I was just asking my Mom about this the other day. As I am currently fighting with something on the right side of my head. I think, I know it sounds funny..but I think the muscle just above my right ear to my temple feels like it is too tight. This followed about five days of a migraine.

    Anyway...My Mom had this several years ago. Back then she looked in a prevention mag and just happened to read about it. She was already taking B Complex 100s..but she upped one of the Bs..I wanna say it was the B6, but I am not positive of that. Anyway, when she had done this for a went away and did not come back again.

    If you are interested..I can ask her when I talk to her tomorrow.

    Good luck to you...Sherry
  9. suzanne

    suzanne New Member


    Thank you for writing to me. I am so sorry I haven't replied back sooner but I went away for a few days and just got home.
    you sound like you have or expercising the same thing. It isn't very plesant. It hurts alot. Do you get the the eye and bouth droups? and at time speech is slured. I have been fighting this for years and the docs don't do anything to test for it. My mothers was test, a tub was inserted in the groin area and up to her head and they found it. she had to be awake for the testing. She was given meds to control it but my mom was never the same after that. She just wasn't her self and then became very sick for years and then stomach cancer, she passed away 8 years ago. She went through alot with really no answers.
    I would like to hear from you more. Keep in touch, OK
  10. suzanne

    suzanne New Member

    Dear Karen

    I have been away for a few days and also new here. I would like to thank you for your reply. I didn't feel alone. does she still have it? did she even get test for it, if so what kind of test. Any meds. It is a awful thing to have it just hits for reason and when it does I have to lie down until it ease's up. Normanlly it take days to go away. Thinking is clear either when it happens.
    Thank you again Karen
    Soft Hugs