Trigeminal Neuralgia, a New Tic for Me

My writing's been on hold while I researched articles on a new tic disorder. A neurologist recently told me that I have trigeminal neuralgia, also known as tic doulourex. It earns this "tic" label because the sporadic pain that is generated from a hyperactive trigeminal nerve is so intense that a person often jerks in response to an attack. The target area is the face, jaw or eye.

It is also called the "suicide disease" because those who cannot find relief may be unable to bear the episodes, which are like electric shocks.

After tests to find a structural cause, the doctor said my case was idiopathic; there's no explanation. "It just happens," I was told. The situation reminds me of the common assumption that there is no explanation for Tourette syndrome, which our readers know is not true.

I'm using conventional and alternative treatments, and am determined to find answers. I'll let you know what I learn. And on good days, I'll get back to my writing!

Comments

[Yannick]

Hello,

May I suggest you look into upper cervical chiropractic care as part of your holistic management of this horribly painful conditions.

You can google "upper cervical chiropractic and trigeminal neuralgia".

Yannick Pauli, DC
Switzerland

Other resources:
http://www.erinelster.com/ConditionsDetail.aspx?ConditionID=25

Cranial and Other Chiropractic Adjustments in the Conservative Treatment of Chronic Trigeminal Neuralgia: A Case Report
FRANK O. PEDERICK

ABSTRACT: Trigeminal neuralgia, sometimes called tic douloureux, is characterised by episodes of electric-shock-like pain in areas of the face where branches of the trigeminal nerve are distributed. Medical treatment includes pharmaceuticals, analgesics, surgery, radiosurgery, low-powered lasers, TENS, acupuncture and biofeedback. Manipulative approaches have been used successfully in a medical centre in China, and reports of successful treatment with chiropractic techniques have been published. The patient in this report had a history of right-sided facial pain, diagnosed as trigeminal neuralgia, over a 6-year period with remissions after dental or medical treatment and exacerbations, the most recent of 2 months duration. Prior to cranial and other chiropractic adjustments, the patient had continuous pain that she rated at 9.5 on the visual analogue scale, and after 4 consultations over an 11-day period, pain had reduced to 0.5. Spinal and cranial adjusting potentially affects a wide range of causes of trigeminal neuralgia and offers a conservative, low-cost, low-technology initial approach which, if ineffective, will not greatly delay or inhibit other treatment. Occasional maintenance care may be required in some instances to reduce occurrences.

INDEX TERMS: MeSH: CHIROPRACTIC; TRIGEMINAL NEURALGIA. Other: CRANIAL ADJUSTING, SPINAL ADJUSTING; CRANIAL MANIPULATIVE THERAPY; SPINAL MANIPULATIVE THERAPY; SOFT TISSUE THERAPY.

Chiropr J Aust 2005; 35:9-15.

[kluzz]

I'm about to try NUCCA (Upper Cervical Chiropractic) for my TN.
Had one adjustment so far. First day sore with breakthrough pain (on Neurontin) but fine the next day. I won't go off pills slowly until about a month into chiro treatment. Will try to post my results and hope to hear yours too.
Best wishes.

[Ellen]

Please update us on your condition.
I suffer from TN (2 years) and am in an active state. I am on Neurontin and Baclofen.
I have to go back to school in a few weeks to teach and need to find a treatment.
Any help would be appreciated.

[Sheila]

Ellen, sorry for the delay--I've been out of town. I'm doing well after using a number of efforts. I will write a full response on the blog at some point. Meanwhile, I will send a note to your email and if you like, we can arrange to talk by phone. Wishing you the best, Sheila

[Kathleen]

I had Trigeminal Neuralgia, 7 years ago. I was on major meds for 1 year. Nothing worked, I had emergency brain surgery. My artery was wrapped around this nerve. I never knew it was called the suicide disease. I asked my Dr. if people killed themselves before this great surgery. He said they did and still do. I had microvascular decompression at Northwestern Hospital in Chicago. It was the best! I am pain free and a survivor. Don't suffer, my Neurosurgeon was the best.

[Sheila]

Thank you, Kathleen. I'm so glad you found relief with surgery. My situation was different because there was no artery pressing on the nerve, so I was not a candidate for that. I have found help using a number of efforts including an approach along the lines of what Yannick Pauli, DC recommended--with body work from an osteopath. I also did things to heal the nerve (diet, nutrients, B12/folic acid injections), had dental bite issues addressed, and took standard medication for several months; gratefully I was recently able to get off of that because of problems with side effects. You are right that it is important to look for answers and treatment. I am symptom free now but will never forget the experience. Maybe someday we can share information in a publication of some kind. Thanks again for writing. Sheila

[Doris Gilbrech]

Hi Sheila--I am so very happy you are symptom free now.

God bless you always.

Love,
Doris Gilbrech (Fayetteville, AR)

[Sheila]

Thank you for your kind note,Doris. I so appreciated your support during that difficult time. Your ideas for reducing inflammation and exploring possible factors that might be playing a role in the trigeminal neuralgia were a a big help! I hope all's well with you, Love, Sheila

[Ginny]

I have symptoms of Trigeminal Neuralgia. While I'm waiting for the date of my appointment to arrive, could someone tell me how they determine whether or not an artery is pressing on the nerve? Thanks for your time.

[Sue]

I believe I have TN.I have had a standard MRI and it came back normal,which is common for TN sufferers. The MRI ruled out tumors and MS. I have no underlying dental issues. I am waiting to have a special MRI that is more powerful(possibly using dye) that will determine if an artery is pressing against my trigeminal nerve. I have been told this is the MRI to get. I have been suffering on & off for 6+years. I am on Gabapentin and I have breakthrough pain,double vision & drowziness. I am hoping to have a MVD. Good luck to all. Sue

[Sheila]

Hi Ginny and Sue--
Ginny, as Sue mentioned in her note, an MRI is used to determine if you have anything pressing against the nerve. I recommend the book Striking Back by Weigel in case you haven't seen it. (It's on Amazon.) It gives lots of great information in a reader-friendly manner. It also has a section on natural approaches that can be used with or without medication. I hope you will both let us know what you find and how you are doing. I know it's tough but there is reason to hope for improvement. Best wishes, Sheila

[Elizabeth]

I was diagnosed with TN in 2001. I went thru all of the usual tests and medications. I have been off meds for four years now and have focused on being as healthy as possible. I am now a health counselor and help others to become healthy. After no episodes for four years, I had one in early November. I came across the Low Saturated Diet and contacted Frank Sherwood. After speaking to him I decided to try it. Given how healthy my diet is to begin with I was curious to see what bringing my saturated fat down to 10g/day would do. Within two weeks I was almost completely symptom free. I discovered that by eliminating five foods from my diet I can easily meet that threshold. I highly recommend trying it. He has also suggested that I look into the upper cervical chiropratic approach. This is my next project after the new year.

[karen hughes]

Hi, I have read the comments with interest and and to share my experience with anyone else suffering with Trigeminal neuralgia. My condition was idiopathic having had a negative brain scan and despite the horrible side effects of the carbemazepine was told basically to go away and keep taking the medication. I did some research on the internet and came across and american doctor who had found relief for his trigeminal neuralgia with the help of a chiropractor. I too decided to do the same and was told i had a subluxated cervical spine which was manipulated back into alignment, over the next three treatments my pain rapidly resolved and i was able to reduce my medication by 75% over that period.I feel i have my life back and whilst it may not help everyone it is worth a try rather than continue on suffering just hoping it will go away!

[Trigeminal Neuralgia Treatment]

Advanced natural therapies offer quick relief from pain. They have a calming effect on the nerves, restore optimal neurotransmission and prevent relapses. biogetica.com
(http://www.biogetica.com/cure-trigeminal-neuralgia.php)

[Sue Remmey]

Sheila,
I used to receive your publication years ago and just hit on your website and saw you have TN. I have been a TN support group leader for 15 years. I have had 2 failed surgeries but not giving up. I believe that I have a structural problem but also a genetic component.( HLA & MTHFR) Upper cervical worked for about 7 years to give partial relief but I was never able to get complete relief. I have been doing cranio sacral work/body therapy for 3 years and just started a gluten free and soy free diet. Please keep in touch and let me know if your previous work at Latitudes leads you to some interesting alternative methods to help with TN. This disease will be solved by the people!

[Sheila Rogers]

Hi, Sue! I remember your name and it's nice to hear from you, though so sorry that it is TN related. Fortunately I am doing well, no problems now. I had cranial work, had a jaw bite fixed, and wear a guard on my teeth at night. But I also followed diet and nutritional alternative recommendations in the book Striking Back faithfully to help rebuild the myelin sheath (that was the goal anyway) and calm the nervous system. I do not have a structural problem around the nerve as many do; the contrast MRI was fine.But the day I had the dye injected was the WORST TN experience ever.I then understood the true potential horror of this condition. Let's talk sometime. Email me your phone number, OK? Sheila