I can’t believe what I have been suffering from exists for others and that there are support groups! I have only self diagnosed after progressive symptoms over the years led to an excruciating attack today, lasting for past 12 hours. I have been online researching my symptoms, reading articles and websites with studies and descriptions that fit to a tee. I am happy (but sorry for others) that I am not alone. I thought I was experiencing a toothache from a root canal due on a tooth near my “trigger point” on my right cheek, but I have had this trigger point “shocking nerve pain” for many years and just thought it was a freak thing! I thought maybe today that my tooth was getting worse and was making the “trigger nerve” thing “act up”. (Which may be true, as it is so close.) However, I have noticed in the last year that I have had more frequent attacks, with daily pain when the cheek is touched even slightly, as in washing face, smiling, chewing sometimes. My question is, after all I’ve read over the last 3 hours on procedures, pharmac euticals suggested, etc., are there any alternative therapies anyone has used with any success? More conservative? Vitamin/nutrition/herbal/acupuncture, etc.? Have health insurance but I don’t want to rush to get MRI’s ($) and hate meds…yet THE PAIN…and it’s said to be progressive!!! Sorry for the whining, any advice would be welcomed! Thanks.
Hi Kimberleigh,
I’m really sorry to hear about your symptoms. Hopefully the group will be able to answer your questions. Perhaps they can reccomend some techniques they used to engage a doctor in a discussion as well.
Cheers,
Scott
Thanks, Scott, after (or I guess, still during) this first really severe attack, which is still with me after waking this morning, I can’t help but feel fearful of “getting help”. I have always had the “shock pain” upon pressure, like washing face, brushing teeth, etc., but it was never something that lasted or affected so much of my face with lingering aching as well…It feels this morning as though my face is swollen, but is not, thank God as I have to go to work! So I wonder whether my GP knows about TN, I appreciate your thoughts on opening a discussion, or suggesting meds that I’ve read have brought some relief. I’m afraid I’ll come off as a hypochondriac! This I would certainly like to try before rushing to the dentist to extract the tooth below the pain (which is now extremely sensitive/painful), wondering if the tooth issue exacerbated the TN? If alot of Dr.'s, Dentists don’t know about TN won’t they think that’s it? I have read so much material that suggests not, but that is what it feels like so I can see why people “freak out” and think it is their tooth gone bad! Well, I wish there were more participants in this website/forum for more chances of replies…there’s another forum in the UK that I checked into, larger but I have not heard anything there yet. They also “suggest” you become a member though you can post and read issues…I’m nervous about any medical testing that may be required, I am recuperating from major foot surgery and waiting for the bills my insurance doesn’t pay as we speak! Thanks for the reply and well wishes, it really does help!
KIMBERLEIGH
MY PROFILE TELLS MY STORY. I HAVE A NEW DEVELOPMENT. MY JAW AND LYMPH NODES ARE SWOLLEN. I HAVE WHITE SPOTS ON MY THROAT . THE DR. SAID SHE WAS 95% SURE I DID NOT HAVE STREP BUT TREATED ME FOR IT ANYWAY. THAT WAS THREE DAYS AGO. I STILL HAVE THE SYMPTOMS BUT NOT AS BAD. MY NEURO DR. SAID IT IS NOT RELATED TO THE TN. MY DR. WILL LOOK AT A RECENT CAT SCAN TO SEE IF SHE CAN FIND ANYTHING. I WILL LET YOU KNOW. MY SUPPORT GROUP LOOKED UP THE SYMPTOMS OF TN BEFORE I WENT TO THE ER FOR PAIN. I USED THE TERMONOLOGY THAT DESCRIBES TN. THE RN KNEW IMMEDIATELY WHAT I HAD AND PROCEDED TO TELL THE DR. HE AGREED IT WAS TN AND PUT ME IN THE HOSPITAL. FROM THEN ON I WAS ASSIGNED A NEURO WHO HAS BEEN VERY HELPFUL. I TRIED A NERVE BLOCK (HE PERFORMED IN HIS OFFICE AND RELIEVED THE PAIN IN 1-2 HOURS) INTENSE PAIN FREE FOR ONE WEEK TODAY!. MILD PAIN NOW. BLOCK WILL NOT LAST LONG. I AM SEARCHING ALL ALTERNATIVES INCLUDING NATURAL SUPPLEMENTS. I AM A SINGLE MOM. WHAT AM I SUPPOSED TO DO TO SUPPORT MY CHILDREN? I HAVE PAIN ALL THE TIME. I AM TRYING TO RESOLVE THAT I WILL NEVER BE THE SAME BUT IT IS SO HARD.
Hi Kimberleigh,
(LONG REPLY)
I am Sorry that you have TN, but I am very glad you found us & this website. Living with TN is fairly new and is a growing site for TN patients around the world, so do stick with us and by all means keep in touch with other sites as well. The more information you can get about your health and TN is knowledge you can approach your Doctors with. The biggest diagnostic criteria for TN is us, the patients ourselves. Your Doctor will likely want to recommend a visit to a Neurologist who can organise an MRI to rule out other potential disorders that can mimic the symptoms. A clean MRI leaves the neurologist with the diagnosis of TN. Whether you choose to follow up on the MRI is at your own leisure - don’t feel forced into doing anything you’re not comfortable with.
Some people have trigger points, others do not. Some like me, have trigger points only some of the time and these are always worse just prior to and after a major attack. That has been this past week for me. My Thursday night and Friday morning were just that, after a week of spontaneous triggers, stabs, jabs, zaps etc I had a solid 14 hour long attack. The pain gets that bad, you cannot lie down, sleep, eat, talk and as you’ve said washing your face, brushing teeth, smiling etc., are all things that can add to triggers when the pain gets bad.
As you’ve noticed, there are lots of websites, studies and articles - both scientific and questioning varieties. So there’s lots of information out there. As for medicines, it is the first line of treatment - quite often “Tegretol” (Carbamazepine). Believe me, I grew up abhorring tablets of all kinds, had a phobia in fact when it came to swallowing any sort of pills. For the most part, I’ve gotten over that - because when it came down to it, the relief I began to get from the Tegretol I’ve been taking was far more appreciative than the pain the illness causes.
The preferred format for Tegretol is the one they refer to as a ‘controlled or sustained release’. You need to be taking a starting dose for at least 2 weeks, after week 1 you’ll notice the benefits, there may be side effects initially too, you need to work through these unless they’re severe as they do go away - and for the Doctors, the reaction from Tegretol working is a confirmation of your diagnosis - as if it begins to help, then you do have TN. Some people cannot take Tegretol, and in these cases other medications will be recommended to you by your Doctors.
As for alternative therapies, there are many. Some prefer Acupunture, others a vitamin b12 regime, some a soy diet - there is no end to what you can try. Some people swear by the results they get, for others there is no benefit at all. Alternative therapies is very much a personal regime - and only you will know whether or not something is working for you.
Do speak with your Doctor as Scott has suggested to you - that is very important you discuss with them what it happening now, how long your symptoms have been on going for, triggers, sensations etc and it is my personal encouragement that maybe you could consider a low dose of an anti-seizure medication with a complimentary therapy as well.
Admittedly too, finding yourself a good primary care doctor knowledgeable with TN and it’s care may be difficult, it’s also a good recommendation to look into finding a good pain clinic.
For myself it was over 10 years before I was diagnosed, and I’ve been diagnosed now for 4 years. I’ve had 2 MRI’s, CT scans, X-rays, dental extractions and more.
TN, yes it is progressive I’m sorry to say. This is why it is important to get the care of a good Doctor as soon as you can. You can have potentially months or years where ALL pain disappears and then it may return out of nowhere. With Tegretol, I began taking a 200 mg controlled release tablet twice daily. With my Doctors instructions I have had to gradually increase this. I’ve been as high as 1400 mg per day, and have now returned down to 1000 mg per day. It becomes a balance between the pain of TN and the side effects of the medication for me. Not everyone experiences side effects and if you can or are willing to try, then I do recommend trying.
I hope this makes sense to you Kimberleigh, I’ve not long taken my night dose of pills and I’m in pain now. Think about your options and I hope others can contribute to your questions as well! Remember that medicines are not the only options, but it is the one I have some experience with - my TN is bilateral and my Neurosurgeon advised I am not eligible for surgery, so here I am - I will continue with Tegretol until it stops working, and then I will move on to a different medication.
I wish you all the best! Please let me know if I’ve written something that does not make sense - as I said, I’m a little out of it tonight 
I just took 7 different tablets for different things. Ok, well it’s close to 1 A.M. now (I’m in Australia) so hopefully we can chat again soon. If I am able to provide you with any advice, as everyone here is happy to do - then please let me know!!
Best Wishes,
Kerry
Thanks for your post, Joyce, I feel your frustration through your writing, hopefully your maybe “flu” (?) symptoms will have lessened by the time you read this! It must be hard when you are dealing with TN to have some other “affliction” set in as well…a single Mom too…prayers to you! I am recuperating from major foot surgery while dealing with this latest “flare up”, so, head to toe I have not been a happy woman! I so appreciate other member’s input to me, a newbie, with so little information…I have, it seems, only just begun my trek into the unknown, I gave in and went to the Dr. (GP) after a rough half day at work. To my surprise he was extremely knowledgeable on TN, due to my symptoms having been around awhile until this latest flare-up, he is not rushing me for an MRI, feeling that if it was something more serious causing it (like Ms or tumors, annheurisms, oh my) I’d have had more serious symptoms by now. So, he states that Lyrica (semi-new drug) has shown better results than Tegretol, or Neurontin, with the side effect extreme sleepiness initially. I will start his RX tonite, and slowly work up the dosage to see if I get some relief…we will see what’s next, I was referred to a couple good neurologists for MRI scans in the near future. His calm helped me, I have been reading so much the last few days about possible ecalation and continued pain even with surgeries that understandably I was overwhelmed! I hope that you find some relief soon, stay in touch and thanks again…
JOYCE L said:
KIMBERLEIGH
MY PROFILE TELLS MY STORY. I HAVE A NEW DEVELOPMENT. MY JAW AND LYMPH NODES ARE SWOLLEN. I HAVE WHITE SPOTS ON MY THROAT . THE DR. SAID SHE WAS 95% SURE I DID NOT HAVE STREP BUT TREATED ME FOR IT ANYWAY. THAT WAS THREE DAYS AGO. I STILL HAVE THE SYMPTOMS BUT NOT AS BAD. MY NEURO DR. SAID IT IS NOT RELATED TO THE TN. MY DR. WILL LOOK AT A RECENT CAT SCAN TO SEE IF SHE CAN FIND ANYTHING. I WILL LET YOU KNOW. MY SUPPORT GROUP LOOKED UP THE SYMPTOMS OF TN BEFORE I WENT TO THE ER FOR PAIN. I USED THE TERMONOLOGY THAT DESCRIBES TN. THE RN KNEW IMMEDIATELY WHAT I HAD AND PROCEDED TO TELL THE DR. HE AGREED IT WAS TN AND PUT ME IN THE HOSPITAL. FROM THEN ON I WAS ASSIGNED A NEURO WHO HAS BEEN VERY HELPFUL. I TRIED A NERVE BLOCK (HE PERFORMED IN HIS OFFICE AND RELIEVED THE PAIN IN 1-2 HOURS) INTENSE PAIN FREE FOR ONE WEEK TODAY!. MILD PAIN NOW. BLOCK WILL NOT LAST LONG. I AM SEARCHING ALL ALTERNATIVES INCLUDING NATURAL SUPPLEMENTS. I AM A SINGLE MOM. WHAT AM I SUPPOSED TO DO TO SUPPORT MY CHILDREN? I HAVE PAIN ALL THE TIME. I AM TRYING TO RESOLVE THAT I WILL NEVER BE THE SAME BUT IT IS SO HARD.
Wow, Sarah, what can I say about your amazing post back to me? How long did that take you? Talk about dedication to helping others! I will definitely check out the book “Striking Back”, I’d like to follow your suggestion on combination therapies…you have been in relapse mode 2 1/2 Years?? Holy shit, can that really happen?? Of all I’ve read I am nowhere near the suffering of others, just beginning to have serious enough symptoms to seek help. Okay, I finally did go to the GP today reluctantly after a rough day at work. I am a substance abuse counselor (in recovery myself 15 years from drug/alcohol issues) and my job is to empathize with others, talk and smile alot, not easy when you feel miserable. Psychsomatics fail me lately! Lo and Behold, my Dr. was very knowledgeable re: TN and there was no language barrier at all! Indeed, he diagnosed me with the dreaded affliction immediately and discussed new studies/trials with Lyrica replacing Tegretol, Neurontin and Baclofen. My history of mild symptoms for so many years leading up to increasing sensitivity then this flare-up, he stated this was a classic case of TN, did not fear that there was something serious behind it that we had to rush to an MRI for at this point. So as the side effect of Lyrica (another anti-convulsant, used for fibromyalgia too) is extreme sleepiness, the RX is started gradually and I will take it at bedtime for a few days, working up to 3x daily to start with…he gave me a couple good neurologist’s names for follow-up MRI’s, whenever, did not seem alarmed, said I’d have had more serious symptoms of other issues (MS, tumors, aneurisms, etc.) by now if there were other causes to rule out. He discussed the various “invasive” procedures/surgeries at “end road”, but was comfortable starting with medication. I felt much better having seen him and feel comfortable with him following my progress (!) or spiral to hell(?). Yes, knowledge is power, and again I thank you for your support and unselfish giving of your time. Prayers to you in your MVD surgery, stay in touch and I will post for others the verdict on Lyrica…
sarah said:
HI Kimberleigh,
You are not alone. The Trigeminal Neuralgia Assocation (TNA) publishes a wonderful book called, “Striking Back.” In it they talk at great length about Alernative Treatments. The TNA can be reached at www.endthepain.org I have found that over the past 2 1/2 years accupuncture was a great treatment for pain. I have decided just recently to go ahead with MVD surgery as I am finding the pain has gotten to point that it is kicking my butt BUT I have been dealing with a TN relapse of 2 1/2 years and the doctors think I may have had TN for over 10 years total.
I did not think you were whining. Chances are if you feel it there is someone else who is feeling it too!!! Something I found that was a great resource in talking to my doctors is the 7 point TN diagnostic that follows: Also is listed treatments for TN including some altenative treatment. I respect this is a lot of information but, I believe that knowledge is power in this situation.
I wish you the very best,
Sarah Hobbs
TNA Review of Neuropathic Facial Pain
Overview
Please note:
Your doctor or other healthcare professional may not know about or use this classification system. Use it to help you describe your pain. A specific description will help ensure a more accurate diagnosis and more effective treatment.
By Alana Greca, BSN, RN
Former TNA (Trigeminal Neuralgia Association) Director of Patient Support
NOTE: Portions of this article are based on anecdotal information from patient calls and e mails.
CAUSE/SYMPTOMS
Neurosurgeon and member of the TNA Medical Advisory Board, Kim Burchiel, has proposed a classification system that divides neuropathic facial pain according to the cause of damage to the trigeminal nerve. OHSU Facial Pain Classification System
This classification system was used in the book, Striking Back!, and will be used here to provide continuity in terminology. Please be aware that other medical providers may use different terms for the same problems. This discussion includes trigeminal neuropathic pain, trigeminal deaffrentation pain and post herpetic neuralgia.
Trigeminal neuropathic pain (TNP)—facial pain which is due to unintentional injury from such things as:
facial trauma
dental procedure
complication of sinus surgery or other ear, nose or throat operation
or from side effects of stroke or diabetes.
Symptoms:
if triggered, the pain is usually in the trigger area
pain described as constant, dull, burning or boring
numbness and tingling may also be present
intermittent sharp stabbing pain may also occur
Trigeminal deaffrentation pain (TDP)—This is pain that occurs when parts of the nerve are severely injured and have little or no function as a result of intentional injury.
TDP occurs as a complication from surgeries done to treat TN pain, such as:
Alcohol or glycerol injections
Radiofrequency lesioning
Balloon compression
Neurectomies
Radiosurgery
Deafferentation pain symptoms
Generally, continuous aching, burning quality – usually with numbness, tingling and/or hypersensitivity in the affected area. (“burning numbness.”)
In Striking Back! The Trigeminal Neuralgia and Face Pain Handbook, it is stated that “symptoms may even go beyond the trigeminal system….arm pain, shoulder pain, chest pain and even queasiness…”
Intermittent sensations like itching, crawling, pulling or pressure may occur. If TN pain has been relieved, these symptoms will occur alone or in addition to TN pain, if the surgery is ineffective.
Anesthesia dolorosa
“…This is a seemingly impossible combination of both dense numbness and severe pain in the same area following an injury to that area.” There are several theories as to why pain would be felt in a profoundly numb area. The first is that somehow the touch nerve fibers were destroyed, but the pain fibers are still functioning. The second is that the brain center which monitors and interprets the nerve signals either remembers or substitutes signals when it is no longer is receiving impulses from the non-functioning nerve.
Facial Neuralgia Resources - AD
Center for Cranial Nerve Disorders - AD
Post herpetic neuralgia (PHN)— This is pain which follows an attack of shingles (herpes zoster), because of viral damage to the nerve. If it affects the glossopharyngeal nerve, it gives throat pain; hearing difficulties result if the aucoustic nerve is damaged; drooping or paralysis of the face may occur when the facial nerve is involved; damage to the trigeminal nerve (usually the first branch area) presents as facial pain.
Symptoms
Pain tends to be more constant than classic TN
different descriptions of pain—sharp & jabbing; burning pain; deep and aching
dull and borimg
Along with the pain there is often skin sensitivity and sometimes an itching or numb feeling.
Facial Neuralgia Resources - PHN
E-Medicine/Web MD - PHN
Mayo Clinic- PHN
DIAGNOSIS
It is important that neuropathic pain be differentiated from trigeminal neuralgia.
Description of symptoms—the quality, characteristics, occurrence of pain is the most important means of accomplishing this.
The onset of pain was preceded by one of the causative events mentioned above.
TREATMENT
In post herpetic neuralgia, nerve damage from the virus can result in pain which lasts for months or years. The pain can resolve spontaneously or it may be permanent.
Regarding trigeminal neuropathic pain and deaffrentation pain, George Weigel in Striking Back advises “As with neuropathic pain, undergoing additional surgeries on the nerve is usually not going to help and may even make things worse. Deafferentation pain may, however, respond to some of the same medications and therapies used to treat neuropathic pain. Deafferentation pains may get better with time, but like neuropathic pain, they also may become permanent.”
CONVENTIONAL MEDICAL TREATMENT
FOR NEUROPATHIC PAIN
DRUG
TREATMENT
Some of the websites for checking medication information
RX List - The Internet Drug Index
Medscape.com
Drugs.com
IQ Health Drug Information Site
Search For Drug Information
Search for a specific drug or multiple drugs and read leaflets in English and Spanish.
Check For Drug Interactions
Check for drug-to-drug, drug-to-food interactions and check for allergic reactivity for many medications.
Drug Digest
DRUG
TREATMENT
Some of the websites for checking medication information
RX List - The Internet Drug Index
Medscape.com
Drugs.com
IQ Health Drug Information Site
Search For Drug Information
Search for a specific drug or multiple drugs and read leaflets in English and Spanish.
Check For Drug Interactions
Check for drug-to-drug, drug-to-food interactions and check for allergic reactivity for many medications.
Drug Digest
Anticonvulsants
Neurontin and Lyrica for burning, aching pain
Tegretol, Trileptal, Keppra, Zonegran, Lamictal, Topomax as needed
Pub Med
Antidepressants
Tricyclics, such as Elavil and Pamelor
CNN Health Library
Others such as Effexor, Cymbalta
Mayo Clinic Pain Medications
Topical
Hot pepper cream, Lidoderm
NGX-4010 (Transacin) being studied now for PHN
Clinical Trials
Narcotics/
Opiods
If effective, use as needed
Medscape Article - Opiods
Medscape Article - Management
Medscape Article - Fentanyl
IV
MEDICINE
Lidocaine
Ketamine
Medscape Article - Ketamine
Adenosine 5’-triphosphate (ATP)
Pub-Med - IV ATP
Pub-Med - Analgesic ATP
MEDICAL TREATMENT
Nerve Blocks
Cortisone and anesthetic agent which may
give pain relief for vary time—
hours, days, weeks
Emedicine - Injections
Botox Injections
If effective can provide pain relief for 2 to 3 months
In some is only effective for sharper pains, but not burning pain
Emedicine - Botox
Medicine Net - Botox
Pulsed Radiofrequency
Does not damage the nerve
If effective, pain relief for 2-3 months
Transcranial Magnetic Stimulation
Has been used as pre testing for motor cortex stimulation
Has been used for pain control and
the following site
^ (see note below)
SURGICAL TREATMENT
MVD
Generally, not effective;
may be attempted if MRI shows compression
Percutaneous procedures (radiofrequency, balloon compression, glycerol injection
Not usually done for neuropathic pain
because they could increase the
chance of complications, such as
deaffrentation pain and anesthesia
dolorosa
Radiosurgery
Gamma Knife, Cyber Knife, Novalis, etc.
Not usually done for neuropathic pain
because they could increase the
chance of complications, such as
deaffrentation pain and anesthesia
dolorosa
Peripheral Nerve Stimulation (PNS) Done for 1st and 2nd branches only
Electrodes placed under skin of face over nerve
Connected to battery for trial period
Settings can be adjusted and can be turned off and on as needed
Medscape - PNS
Columbia University Med Center - PNS
Neurosurgery Online - Pilot Study
Blackwell Synergy - Neuromodulation
Motor Cortex Stimulation (MCS)
Can be used for neuropathic pain in all 3 branches
and with numbness, including anesthesia dolorosa
Piece of skull removed at top of head and
electrodes placed on covering of brain
Iniatially, all changes in settings are made by
medical personnel
SpringerLink - Journal Article
Neurostimulation— Both PNS & MCS Tried after medical treatment has been
ineffective
If thought to be effective during the trial period, battery is implanted under the skin
(like a pacemaker), but a successful trial
does not guarantee continued effectiveness
Facial Neuralgia Resources - Neurostimulation
Design News - Neurostimulation
CAM FOR NEUROPATHIC PAIN
Complementary and Alternative Medicine (CAM) is the title given to treatments which are not part of mainstream medicine. A variety of stances exist regarding CAM use:
Some would never consider using untraditional modes of treatment. They have no belief in CAM and no faith in anecdotal information.
Some people completely believe in and adhere to the superiority of CAM therapy. Their basic premise is that the core of health care is promoting wellness of the whole body through diet and supplements and through healthy life style changes, such as exercise, relaxation and stress reduction. Logically, no matter what the disorder or disease, the chance of recovery should be increased if a person is optimizing their mental and physical health. Traditional health practitioners often do not address these issues with their patients. Those who support alternative therapies often rely on testimonials of others experiences to evaluate the worth of any particular treatment.
Many people are already using alternative therapies in addition to medications or other traditional treatments. I have talked with a few people who have been able to use a CAM remedy instead of medication. More often, facial pain patients tell me that CAM therapy lessens, but does not eliminate the pain, but by using both options, they can achieve better control. A recent study* showed 41% of the seniors surveyed were CAM users, that 80% felt these therapies were beneficial, but 58% , for a variety of reasons, were not sharing the information about their alternatives with their medical doctor. The most frequent reason was that the doctor was not asking, and if that is your experience, then you should take the initiative to provide this information. Not all physicians are supportive of CAM usage, but it is important that your doctor be aware of your complete treatment plan in order to assess any potential interactions.
Integrative Medicine
Traditional practitioners call for evidence-based medicine, so that all treatments, including alternative ones, would be scientifically studied and proven to be effective. There are many issues which make scientific study of some therapies difficult, but all alternative research will strengthen integrative medicine and increase available treatment choices. CAM at the NIH.
On its website, NCCAM (National Center for Complementary and Alternative Medicine) has a listing for 100+ CAM related research projects. While these are not directly connected to facial pain, some are related issues. You may find a study being done for another health issue which is pertinent for you or someone you know. The website is below followed by a few examples:
NCCAM Funded Research and Rehab Research.
R01 AT001517-04
Phytoestrogens as an Alternative Treatment for Multiple Sclerosis
Bebo, Bruce F
Oregon Health and Science University
OR
R01 AT001521-04
Melatonin Randomized Trial in Insomnia in the Elderly
Gooneratne, Nalaka S
University of Pennsylvania
PA
Nowhere does this blend of medical philosophies seem more appropriate than for those dealing with neuropathic facial pain. No one medication or one therapy is usually effective for this type of pain. Those whom I have talked with, who are successfully coping with neuropathic pain, use a combination of medications (see conventional medications chart below) and as many of the CAM treatments as are useful to them (see CAM chart below).
Integrative Medicine: Sorting Fact From Fiction
Please note:
If alternative treatments are of interest to you, look for reputable practitioners in your area. Be cautious of internet offers.
CAM TREATMENTS
MSNBC & Newsweek - Tips for Treating Pain
Answers.com - Glossary of Alternative Medicine
Categories of Alternative medicine Examples
Other Medical Systems
Homeopathic Medicine
Naturopathic Medicine
Traditional Chinese Medicine (TCM)
Acupuncture, acupressure
Pub-Med - Acupuncture
WebMD - Arthritis Acupuncture
Blackwell Synergy - Acupuncture
Ayurvedic Medicine
Mind-Body Interventions
Prayer, Yoga, Pilates, Mental Healing
Bio-Feedback Medscape - Biofeedback
Hypnosis
Guided imagery Forbes: The Mind as Medicine
Meditation NPR: Meditation for Pain Management
Exercise Mayo Clinic - Exercise
Sound, Art, Music, and Dance Therapies
Biologically-Based
Diet, Vitamins, Herbs Medscape - Herbal Therapies
Supplements Newswise - Antioxidants
B12 TimesDaily.com - A Primer on B12
Manipulative and Body-Based
Upper Cervical Chiropractic Care (UCC)
Accademy of UCC Organizations
National Awareness Campaign for UCC
Practitioner Database
Chiropractor, Osteopath, Cranio-Sacral Therapy, Massage
CNN Massage
Energy
Low Level Laser Therapy (LLLT)
Magnets, Electro-Magnetic Therapy, Therapeutic Touch, Reiki, Qigong, TENS Unit
Emedicine - Transcutaneous
*Journal of Gerontology - Complementary and Alternative Medicine
^ The following website has information about a current clinical trial for the use of transcranial magnetic stimulation for TN: Clinical Trials - Magnetic Stimulation
See additional websites for further information about neuropathic pain
http://www.spineuniverse.com/displayarticle.php/article391.html
http://www.medicinenet.com/pain_management/page2.htm
Copyright Trigeminal Neuralgia Association, 2008. All rights reserved
Hi Kerry, thanking you and all others for their in depth posts back to me, it’s wonderful to have this forum (thanks, Ben) to share with each other, I’m learning so much! So you may have read my blogs regarding my good luck with my Dr. today…immediate diagnosis of TN and much information and comfort from him to start my journey…Lyrica (another anti-convulsant, also used for fibromyalgia) a somewhat newcomer to the pharmaceutical world for TN treatment, is studied to do better than Tegretol and others, and I will begin that treatment at bedtime. At this exact moment, unbelievably my pain has lessened a little bit, (I am so
sorry to hear you, Sarah, and Joyce are in such pain) it seems I am at the beginning of my journey…I do fear the progression, these past 2 days have been unbelievable for me but nowhere near what you and others describe! So he gave me referrals to good neurologists for an MRI , I will see how the Lyrica works for now. I will look into supplementing with the B vitamins, homeopathic remedies for nerve pain, maybe accupuncture (arghh, needles, I know, they aren’t supposed to hurt, it’s the idea!) but i like the idea of combination therapies…may psych myself into a juice or water fast as I’ve done in the past to help my body focus healing where it needs to be…lastly, ahhhh, Australia, lovely, (on my to do list) what more can I say? Well wishes, healing, do stay in touch and thanks so much again…
Kerry said:
Hi Kimberleigh,
(LONG REPLY)
I am Sorry that you have TN, but I am very glad you found us & this website. Living with TN is fairly new and is a growing site for TN patients around the world, so do stick with us and by all means keep in touch with other sites as well. The more information you can get about your health and TN is knowledge you can approach your Doctors with. The biggest diagnostic criteria for TN is us, the patients ourselves. Your Doctor will likely want to recommend a visit to a Neurologist who can organise an MRI to rule out other potential disorders that can mimic the symptoms. A clean MRI leaves the neurologist with the diagnosis of TN. Whether you choose to follow up on the MRI is at your own leisure - don’t feel forced into doing anything you’re not comfortable with.
Some people have trigger points, others do not. Some like me, have trigger points only some of the time and these are always worse just prior to and after a major attack. That has been this past week for me. My Thursday night and Friday morning were just that, after a week of spontaneous triggers, stabs, jabs, zaps etc I had a solid 14 hour long attack. The pain gets that bad, you cannot lie down, sleep, eat, talk and as you’ve said washing your face, brushing teeth, smiling etc., are all things that can add to triggers when the pain gets bad.
As you’ve noticed, there are lots of websites, studies and articles - both scientific and questioning varieties. So there’s lots of information out there. As for medicines, it is the first line of treatment - quite often “Tegretol” (Carbamazepine). Believe me, I grew up abhorring tablets of all kinds, had a phobia in fact when it came to swallowing any sort of pills. For the most part, I’ve gotten over that - because when it came down to it, the relief I began to get from the Tegretol I’ve been taking was far more appreciative than the pain the illness causes.
The preferred format for Tegretol is the one they refer to as a ‘controlled or sustained release’. You need to be taking a starting dose for at least 2 weeks, after week 1 you’ll notice the benefits, there may be side effects initially too, you need to work through these unless they’re severe as they do go away - and for the Doctors, the reaction from Tegretol working is a confirmation of your diagnosis - as if it begins to help, then you do have TN. Some people cannot take Tegretol, and in these cases other medications will be recommended to you by your Doctors.
As for alternative therapies, there are many. Some prefer Acupunture, others a vitamin b12 regime, some a soy diet - there is no end to what you can try. Some people swear by the results they get, for others there is no benefit at all. Alternative therapies is very much a personal regime - and only you will know whether or not something is working for you.
Do speak with your Doctor as Scott has suggested to you - that is very important you discuss with them what it happening now, how long your symptoms have been on going for, triggers, sensations etc and it is my personal encouragement that maybe you could consider a low dose of an anti-seizure medication with a complimentary therapy as well.
Admittedly too, finding yourself a good primary care doctor knowledgeable with TN and it’s care may be difficult, it’s also a good recommendation to look into finding a good pain clinic.
For myself it was over 10 years before I was diagnosed, and I’ve been diagnosed now for 4 years. I’ve had 2 MRI’s, CT scans, X-rays, dental extractions and more.
TN, yes it is progressive I’m sorry to say. This is why it is important to get the care of a good Doctor as soon as you can. You can have potentially months or years where ALL pain disappears and then it may return out of nowhere. With Tegretol, I began taking a 200 mg controlled release tablet twice daily. With my Doctors instructions I have had to gradually increase this. I’ve been as high as 1400 mg per day, and have now returned down to 1000 mg per day. It becomes a balance between the pain of TN and the side effects of the medication for me. Not everyone experiences side effects and if you can or are willing to try, then I do recommend trying.
I hope this makes sense to you Kimberleigh, I’ve not long taken my night dose of pills and I’m in pain now. Think about your options and I hope others can contribute to your questions as well! Remember that medicines are not the only options, but it is the one I have some experience with - my TN is bilateral and my Neurosurgeon advised I am not eligible for surgery, so here I am - I will continue with Tegretol until it stops working, and then I will move on to a different medication.
I wish you all the best! Please let me know if I’ve written something that does not make sense - as I said, I’m a little out of it tonight
Best Wishes,
Kerry
Normally a doctor doesnt want to do an MRI if the patient either A>doesnt have insurance or B> they dont fully believe TN to be the diagnosis. Both are detrimental to your health and could be delaying discovering a far worse problem!!! ALWAYS PUSH FOR AN MRI IF DIAGNOSED WITH TN!!! That being said I refused to have mine because of the doctors pushing me to have one asap because of my age. I was almost flat out told that they didnt believe I could have such a severe case of TN without it being secondary to something else…well me being me I researched it…and the few things it could be that would make it “secondary” were so rare and so scary I didnt have the guts to have an MRI. Now I wonder if I have a ticking time bomb in my head because I was too scared to find out for sure.
Hi Sarahs! Well, on Doctors…hmmm, I think one should be proactive in their care and I have continued to research since diagnosed. All of you have a great wealth of information for me too. I should say that my Dr. in his not rushing me to an MRI meant that he did not think I had to go immediately to the ER. He gave me the names of 2 neurologists that he trusts and wants me to get one definitely, I just think he did not want me to panic believing I had a tumor, MS, etc. So the rest is up to me, I do have health insurance, and though I have to pay 20% I think I’m procrastinating because my symptoms are not nearly as bad as everyone else’s I’m reading and so far the meds are working enough to continue to work. There are YETS, I fear… at the moment my house is filled with surgical boots from my partner and I recuperating from foot surgery! I am overwhelmed with the whole thing and keeping up with my demanding job but I’ll schedule it soon I guess…
Sarah C said:
Normally a doctor doesnt want to do an MRI if the patient either A>doesnt have insurance or B> they dont fully believe TN to be the diagnosis. Both are detrimental to your health and could be delaying discovering a far worse problem!!! ALWAYS PUSH FOR AN MRI IF DIAGNOSED WITH TN!!! That being said I refused to have mine because of the doctors pushing me to have one asap because of my age. I was almost flat out told that they didnt believe I could have such a severe case of TN without it being secondary to something else…well me being me I researched it…and the few things it could be that would make it “secondary” were so rare and so scary I didnt have the guts to have an MRI. Now I wonder if I have a ticking time bomb in my head because I was too scared to find out for sure.
Wow Joyce I am going to lift you up in prayer right now.
Lord Jesus please give Joyce relief from her pain! Glorify Yourself in heaven by showing her how awesome and full of grace You are.
Give her wisdom to know the best treatment for her TN.
Minister Your love to her and to all those that experience this evil. Lord Your Word says that nothing is impossible for You… we know You are More than Able to do exceeding abundantly beyond all we could ever ask or think.
Also I just read a study that compression on the nerve can only be see even the best of MRI’s 80% of the time. That a description of the symptoms is really what makes the diagnosis. Now I’ve never had a contrast of my brainstem (MRI) … i’ve had many others b/c of my MS. and People under 50 who get TN - and if the MRI shows no compression by vessels etc… then 15% of the time it’s MS. I didn’t know any of this when I was first dx with MS in 99. I didn’t have TN then it hit me about 4 yrs later - and I think I saw my dentist… he checked things out… but he’s the one that said TN first… when to GP and she knew right away b/c of my description it was TN. Saw my MS neuro about 2 months later for a regular check back and he confirmed it. By then I had already been on the usual drugs for nerve pain b/c of MS… neurotin, tegretol etc. So I wouldn’t say it’s alarming that an MRI isn’t ordered. It might not show a thing - so even if you get one and it doesn’t show anything - that doesn’t mean you DON’T have TN. A good Neuro should know it when you describe how you feel, how often it happens, when it happens etc. At least that is my 2 cents
BLESS YOUR HEART SWEETIE DONT BE AFAID !
I KNOW I WAS SCARED I WENT TO THE DENTIST HE COULDNT
FIND NOTHING BUT, HE GAVE ME SOME PILLS SO I CAN RELAXED,
THEN I WENT TO A SPECIALIST FOR MY NOSE AND EAR THROAT,
DID A C SCAN NOTHING HA! WELL I WENT BACK TO WORK I WAS WORKING
IN THE COLD I WAS MEATCUTTER UT WAS HURTING SO I TOLD MY SISTER ,
WHATS A MATTER WITH ME I COULD'NT TOUCH MY CHEEK ,NOSE WASH MY FACE BRUSH MY TEETH PUT MY SHIRT ON PUT MAKE UP ON I FEEL LIKE KILLING MY SELF JUST THAT ONE TIME,
I WAS SO SCARED MY SISTER SAID I HAVE TNA SO I TOLD MY DR HE GAVE ME SOME
MED I FEEL FINE FOR A YR /A HALF NOW IS BACK DIFF DR TOO HE COULDNT HELP ME!
YOU JUST HANG IN THERE SWEETIE WE ARE HERE TO SUPPORT YOU ANYWAY!! SISTER SALLY