trigeminal neuralgia

[Guest guest]

Do you have Lyme disease and/or other tick borne disease? If you do

sometimes the trigeminal neuralgia gets better when the underlying disease is

treated with the appropriate antibiotics and other medications.

Martha A.

[Guest guest]

In a message dated 6/3/2002 4:13:30 PM Eastern Daylight Time,

RMAgricola@... writes:

> Do you have Lyme disease and/or other tick borne disease? If you do

> sometimes the trigeminal neuralgia gets better when the underlying disease

> is

> treated with the appropriate antibiotics and other medications.

>

> Martha A.

>

What is trigeminal neuralgia? Thanks

[Guest guest]

Thank you for the explanation

[Guest guest]

according to Taber's Medical Dictionary:

Degeneration of or presssure on the trigeminal nerve, resulting in neuralgia

of that nerve. The pain comes on in severe lightening-like stabs and

radiates from the angle of the jaw along one of the involved branches. If it

is the first branch, a shock like pain is felt along the eye and back over

the forehead. If it is the middle fiber, the upper lip, nose, and cheek under

the eye is affected. If it is the third branch, pain is in the lower lip and

outer border of the tongue on the affected side. Pain is momentary but may

occur repetitively for as long as 20 seconds. Paroxysms may last for hours

and then subside for weeks or months . Also known as tic douloureux.

trigeminal nerve: a large mixed nerve arising superficially from the side of

the pons near its superior border . It is attached to the brainstem by two

roots: a large sensory root and a small motor root. It is the fifth cranial

nerve.

[Guest guest]

Dear Dona,

I have had Lyme disease for 10 years and have been treated by many doctors

but the one I have now for the past 4 years saved my life. I also had

excrutiating facial pain and shoulder pain. They did 8 root canals on my

teeth and it didn't do a thing because the lyme caused my cranial nerves to

cause the pain. I also had horrendous pain across the roof of my mouth and

down my throat. I then had 12 teeth pulled, had sinus surgery and a TMJ

artroscopy----all did nothing. What did do something was aggressive IV

treatment for a very, very long time and to be treated for the co-infections,

babesiosis and ehrlichiosis. I also saw a wonderful angel of a pain

specialist. I was on very high doses of oxycontin for a long time. I now take

just a small dose. I feel for you because I was suicidal from the pain. I

urge you to seek out a good pain specialist (not all are so good) and am

hoping you get some relief. I do not know how I survived the terrible pain.

It was a nightmare.

Helen in NJ

[Guest guest]

What is Trigeminal Neuralgia?

Trigeminal neuralgia (TN -- tic douloureux) is a disorder of the fifth cranial

(trigeminal) nerve that causes episodes of intense, stabbing, electric

shock-like pain in the areas of the face where the branches of the nerve are

distributed - lips, eyes, nose, scalp, forehead, upper jaw, and lower jaw. A

less common form of the disorder called " Atypical Trigeminal Neuralgia " may

cause less intense, constant, dull burning or aching pain, sometimes with

occasional electric shock-like stabs. Both forms of the disorder most often

affect one side of the face, but some patients experience pain at different

times on both sides. Onset of symptoms occurs most often after age 50, but

cases are known in children and even infants.

Something as simple and routine as brushing the teeth, putting on makeup or even

a slight breeze can trigger an attack, resulting in sheer agony for the

individual. Trigeminal neuralgia (TN) is not fatal, but it is universally

considered to be the most painful affliction known to medical practice.

Initial treatment of TN is usually by means of anti-convulsant drugs, such as

Tegretol or Neurontin. Some anti-depressant drugs also have significant pain

relieving effects. Should medication be ineffective or if it produces

undesirable side effects, neurosurgical procedures are available to relieve

pressure on the nerve or to reduce nerve sensitivity. Some patients report

having reduced or relieved pain by means of alternative medical therapies such

as acupuncture, chiropractic adjustment, self-hypnosis or meditation.

[Guest guest]

I wrote privately to Dona as my Dr. thinks I may be dealing with it also. I

don't think I am, and I'm pretty sure my Dr. has NO clue what he's talking

about, but I do know a lot about TN. My mother had it and was in intense pain

for years. She had several mental breakdowns from it and was suicidal for a

long time. Luckily it went into remission after five or six years but it had

already done it's damage. By the time she felt well again, she weighed less

than 90# and was a mental wreck. It's a horrible, devastating disease!!

Jean

[Guest guest]

Hi Helen

Thank you for your kind wishes.

Actually another friend who was treated for Babesia told me that was

the treatment that helped her the most withher trig neu.

I was wondering if that was a coincidence or Babs is the culprit

behind the tri neu.

YesI get " unhealthy thoughts " with this torture.

I think it goes with the territory. its called the " suicide disease "

My lyme treatment has only consisted of doxy and bicillinfor the last

2 years , i know that i probably need more aggesive treatment but

here in Australia things are really bad. we have 2 doctors who are

even remotely interested in treating lyme disease. i am seeingboth.

Also another problem is that there is nowhere to be tested for Babs .

I have called somany labs . 99% of our doctors dont even believe Lyme

exists here. thats what we are dealing with.

its a very distresssing situation and i know so many people here with

" obvious LYme disease' who canno get treatment because they cant

prove it.

It took me 2 years to prove my family have it also . I had to have

PCR tests done on them And those tests have only been a recent

development here and the lab that does them is not accredited.

Can i email you privately to get some more info on your treatments?

Imalso wondering what oxycontin is .

Thanks again

Dona

[Guest guest]

Hi Martha

Yes I definately do have Lyme disease but as for the co infections

there is no way here in Australia to test for them

I have been hoping that my Lyme treatment would take care of the

trigeminal neuralgia but am losing hope after 2 years of

treatment.Thanks for your reply

Dona

[Guest guest]

Hi Jean

Thank you for your help.

I know exactly how your mum felt. i have been on antidepressants for

2 years also . Did your mum take any meds for the trig n

I guess the fact she went into remission is hopeful.

thanks again for your help

Dona

[Guest guest]

Hi Dona,

Sure, you can e-mail me privately. Hope things get better for you.

Sincerely,

Helen

[Guest guest]

In a message dated 6/3/2002 12:03:02 PM Eastern Daylight Time,

donatella@... writes:

> I could really use some encouragement.

> Unfortunately I am in Australia. Things are not good here .

> Any help would be greatly appreciated

Dear Dona,

I wish I could help you.

I live in NJ, USA, very near New York City.

If you are unable to find help in Australia, perhaps you could find help

here. If so, I'd be happy to have you stay with me & take you to the doctor

or hospital. I'd be very supportive. Think about it. Might do you good to

get away anyway.

Hugs, a

[Guest guest]

Hi

I am constantly amazed at the kindness and warmth of the American

people. I could not have hung in there this far without the support

of my American friends. I will try and get my doc to get in contact

with Dr B somehow as he is willing to learn .

Thank you all for being there for me . I will hang in here and see

what happens next .

Dona

[Guest guest]

Dona: I had something similar and still do but it travels from neck to ear

to face. It gets worse when I stress or relapse which is often. Klonapin

helped me some. I can understand how desperate people get, having been there

myself...do you have any pain specialists where you are. I was suicidal the

first few years of this illness with the terrible pain but finally got some

relief from a pain specialist just in time. Unfortunately, for me, synthetic

morphines do nothing for me. Please anyone else with this syndrome...what

has helped other people?

Blessings,

Donna

[Guest guest]

Elsa: can you explain what this is? i've never heard of it! Thanks! Mog

[Guest guest]

http://comp.uark.edu/~pcroak/story_html/altern_html/suzanne.html

Well I hope people don't mind that I post here instead of direct. I

personally feel this group is more than just the scoop on poop.. LOL

Here is what I found (above). My first thought when I read your post

was Dr. Schulze's Eye Formula and Deep Tissue. The eye formula

is ...well.. hot, but you get used to it. Dr. has a

similar one. I had a friend that got shingles in his eye. He did

the 5 day cleanse along with the Eye Form and Deep Tissue and was ill

for about 1/2 the normal time and has no lasting effects (unusual

when the eye is involved). He also found great relief from wearing

those black glasses that have holes in them. I don't know what they

are called, but I'm sure you can find them at any pharmacy. I know

both or these things aren't exactly your problem, the story above

didn't involve the eye and my friend had shingles (nerve related).

Also I have to tell you my husband had 3 ruptured disc in his back

and accupuncture made him function again--it was expensive however.

When I was looking for technical info for the issue I had, I found

the search engine *dogpile* to have information that I couldn't find

elsewhere.

Elaine

> Elsa: can you explain what this is? i've never heard of it!

Thanks! Mog

[Guest guest]

I do hope you get your " audience " with her excellency and all goes well. I read

your post with great interest as my Mom had trigeminal Neuralgia on both sides

when she was 20 years old (and preggers with guess who - 53 years ago). Their

great fix was to remove all of her upper and most of her bottom teeth. Weird

thing is she's never had it again. Since our family has a horrible dental

problem of no enamel, we have always wondered about that effecting her pain, and

wondering if it were true trigeminal Neuralgia...sure would love a look at her

old records.

I think you are wise to expect to and want an MRI....it's the least to expect;o)

Take care.

Susie

FMF/RS/Diabetes, ad nauseum

*********** REPLY SEPARATOR ***********

On 3/10/2004 at 1:14 PM , Janet wrote:

To Everyone,

I realized last night that I was having attacks of trigeminal neuralgia on

both sides right where my hair was touching my cheeks. This is new, the

touch of my hair triggering it, so it's progressing. I'm keeping my hair

tucked behind my ears at all times now that I realize that was triggering

it.

[Guest guest]

Susie, Thanks for the story about your Mom. It makes me feel better to hear

that she didn't have anything serious. I want to die with all my teeth in

my mouth so I hope it's not my teeth causing it. I do have a lot of

fractured teeth, maybe that is related. Fortunately, I don't think they

recommend pulling all your teeth for trigeminal neuralgia anymore. Good

Lord, how awful for your Mom! I guess medical care has improved a lot.

Janet in SF

[Guest guest]

Hi Janet,

I hope you get in to see the doctor soon. Many years ago I was tested for MS.

It was a frightening experience. I didn't want to find out that I had MS but I

wanted something that would explain the neurological symptoms that I was having.

Is the doctor you are waiting to see that much more capable than a neurologist

in private practice? I see an ENT doctor at Univ. of Mich. medical school for

my Botox treatments for spasmodic dysphonia. I really like him but dislike

having to go to the University for treatment. Good Luck. I hope you get in

soon.

Kay

[Guest guest]

Thanks, Kay. My rheumatologist wanted me to see this neurologist because

she's a specialist in peripheral neuropathies. I'll give it some more time

and see if it pans out. If I'm not satisfied or they don't give me an

appointment soon, I'll go to a neuro. that a friend goes to who's in private

practice, affiliated with California Pacific, another hospital in San

Francisco. But, first I want to try and do what my rheumatologist wants me

to do, because I like him so much and don't want him to be annoyed with me.

Janet in SF

[Guest guest]

Hello Janet,

Trigeminal neuralgia can be for a number a reasons of it is that. Some

neurologists will think it is TMJ temperomandibular disease as this happens

frequently with those of us with arthritis. Other reasons can be from dental

problems, nutritional deficiences such as B12. , sinus problems or just a viral

infection. Having boths sides doesn't automatially mean MS, it may be mecahnical

too.

My personal experience with this is that it took about 14 months to figure out

it was TN. I did have an MRI and CT too. I was given Tegretol, an

anticonvulsant. This did the trick. Big difference though when it is long

duration or short duration. If it is the route that you end up taking, go the

long duration. Sometimes some people may have injections for this and have full

recovery, while others don't.

I learned a long time down the road that I was anemic most of the time and I had

read Dr. Abrahm Hoffers paper on TN and B12 injections. I consulted with my

doctor and did them. It enabled me to decrease my tegretol dose very well. Other

supplements good for this is Coenzyme Q10 and or omega oils.

I did find though through research that TN and many arthritic diseases will go

together. Think of it, your jaw is a joint. My face use to be swollen a bit on

one side so I knew it had to be part of the problem with my AS.

Some people may use St 's Wort ( homeopathic), but I haven't heard of much

success with this.

Hope this can help. If you have any questions, just email me.

flight1@...

[Guest guest]

Thanks, . I have been taking B-Complex. I have TMJ issues, dental

issues, and sinus disease, so it could be a million things, but is

definitely nerve pain along the trigeminal. I hope they can figure out

what's causing the nerves to be irritated. Still waiting for a neuro.

appointment. It was helpful to hear your experience.

Janet in SF

[Guest guest]

> I am working with a man in his 40's with trigeminal nearalgia. He

has had two surgeries to alleviate his pain, however he has started

getting what he refers to as " ticks " again which precede an episode

of severe pain.

> I did my first assessment yesterday, and balanced the areas his

body picked as out of sync, however if anyone can offer assistance

for further sessions, I would greatly appreciate it.

> This neuralgia started after a received a root canal.

>

> Chris

Hi I came down with this syndrome after a bout with

influenza. What I could find is that the influenza aggrivated it.

I can indentify with his pain, it is sometimes referred to as the

suicide disease...it is about NOT tollerable. Feels like an open

nerve in your tooth with the coldest air hitting it, and comes from

out of no where.

I had just got my machine, SCIO, the week before my attack. It was

my initiation to the world of energetic medicine and my SCIO, to

follow my heart. I had to really depend upon my intuitiveness and

basic skills. I had a friend I could visit with about it. Also my

mentor suggested really working in the " TMJ " (sarcodes, under misc

rx, and in Biofeedback area. Which I did. This really helped me.

Regular balancing of whatever the scan comes up with. I also kept it

goin ALL the time in the " DICTIONARY. Of course, I had my machine at

home and kept it going. I could not sleep, eat, move, practically.

I also type into the " SEARCH " white box on the matrix page, and do a

panel zap of whatever comes up. Usually it will come up with the

disease or condition and remedies for it. I would zap it for 3

minutes, 3 times = 9 minutes total.

In " BODYVIEWER " I put it on nerves, and worked " NERVES " in

biofeedback. It took me a couple of days, but finally all subsided,

and has never come back. Does he have any ongoing TMJ problems. I

did and am assosiating it with that. Flu just aggrivated it. Would

be worth it to look into the virus screen too. See if something is

hanging around from a virus. Hopes this helps. I know the pain the

guy is in. Blessing to you. Sharon s.s.t@...

Recap what I did to help my condition:

TMJ - sarcodes

Dictionary

Body viewer, nerves

Search box, type name in, zap 3 min, 3 times

Biofeedback, nerves

[Guest guest]

I have done work in this area.

It's a pity about the surgery because that may have set up conditions

that are difficult to reverse.

This kind of condition responds very well to Scenar therapy, and given

the root canal, I would also use a Beck Pulser to kill off any bugs that

may be floating around.

GlacerLily@... wrote:

>I am working with a man in his 40's with trigeminal nearalgia. He has had two

surgeries to alleviate his pain, however he has started getting what he refers

to as " ticks " again which precede an episode of severe pain.

>I did my first assessment yesterday, and balanced the areas his body picked as

out of sync, however if anyone can offer assistance for further sessions, I

would greatly appreciate it.

>This neuralgia started after a received a root canal.

>

>Chris

>

>

>

>

>............................................

>

>

[Guest guest]

Thanks for all your input on my sister in law who had trigeminal neuralgia

subsequent to shingles.

FYI: My cousin had surgery to move a vein off his trigeminal nerve. It

worked great an he lost jaw pain that he didn't even know he had.

He saw Dr. Burchiel ot OHSU.

http://www.ohsu.edu/facialpain/index.shtml

( E. Abrahamson, D.C.)

Chiropractic physician

Lake Oswego Chiropractic Clinic

315 Second Street

Lake Oswego, OR 97034

503-635-6246

Website: http://www.lakeoswegochiro.com