Re: Trigeminal Neuralgia NOT connected with ACM

[Guest guest]

> TN is caused by compression of the 5th cranial nerve. The

> compression is usually caused by a blood vessel or sometimes a

> tumor. TN is extremely painful. Suicide is often a concern for

> those with TN because of the severe and constant pain. Is there a

> connection with ACM? That is a good question.

Again, I will tell you that there is NO connection between ACM and Classic

Trigeminal Neuralgia. On a " thin-cut " MRI it shows where the blood vessel is

compressing on the Trigeminal Nerve and it's compressed in at least 2 places,

or it can be a tumor. This is causes by the artery being stretched out over

time. Why this happens in people under 50 they don't know yet. But this has

been known as the " old persons disease " and it's a condition NOT a disease.

The words " extremely painful " are NOT strong enough words for this HORRIFIC

pain. It's the worst pain known to man. What was described above is known

as CLASSIC TN. Just taking something off the enternet about CTN and others

facial pains may not be as updated as the info that I get through my support

group. TN use to be a " catch all " phrase and they DO know that there are

differences in each group. Just because you have facial pain it does NOT

mean that you have Classic Trigeminal Neuralgia. You would KNOW if this is

what you have. It could be a different type of neuralgia. See the critia

for CTN below.

I have many different pains that strike in my face but the CTN is a pain that

you will never forget and you fear it for life even when it's in remission.

Mine has been in remission for over 3 years. When I go to the doctor I give

him the info because of what I learn. I actually know more about CTN than my

neuro. Now, if he would just go to my support group, he would know as much

as me!! We have the best doctors who are working on this condition come to

speak to us.

I was 31 when I got struck with this most HORRIFIC condition and have been

very close to suicide. I am 49 now. If it was connected with ACM everyone

with ACM would already HAVE CTN. MS and TN are connected, they do know that

for sure. I was born with ACM and like I said, my CTN didn't start until I

was 31.

If you think you have a facial neuralgia or have been diagnosed with one,

there is a support group online that is great. I belong to that group. <A

HREF= " http://creps.org/tn/ " >

*** Trigeminal Neuralgia - You're Not Alone! ***</A> down towards the bottom

you will find...

Trigeminal Neuralgia - Facial Pain - Disscussion TN-L:

To subscribe, send mail to <A

HREF= " mailto:tn-l@... " >tn-l@...</A> with the following

command

in the text (not the subject) of your message: SUBSCRIBE TN-L (YOUR NAME)

IT's the best support group online and I have been on it for over 6 years.

Below are the explanations of CTN, ATN, ATFP and a couple of others. I

belong to a TN Support Group here in San Diego at UCSD where I get all the

latest info in drugs that they use to new treatments that they are trying for

CTN and trying to help those with other facial problems.

This is from Tic News Letter dated Dec. 1998, Vol. 3 No. 12. Dr. F.

Alksne @ UCSD Medical Center in San Diego, CA.

Classic Trigeminal Neuralgia (CTN) you must have 5 points: 1) Sharp,

shooting pain. 2) intermittent pain 3) remissions and return of pain 4)

always has trigger zones 5) responds to Tegretol (some have problems with

side effects)

Then there is Atypical Trigeminal Neuralgia (ATN) in which people think or

have been diagnosed with CTN but never have a remission and there is no

response to Tegretol. They can benefit somewhat from the standard treatment

for CTN but Glycerol and Balloon Compression are not as successful.

With Atypical Facial Pain (ATF) there is more complaint of a slow, constant

burning pain rather than electrical flashes. There are no remissions or

trigger points and anything done sometimes makes it worse. It doesn't

respond to Tegretol but Vicodan helps. The physician has to be very careful

in his treatment of ATF as anything destructive to the nerve can cause

Anesthesia Dolorosa for which there is no help. Sometimes they will perform

a MVD and find an unusual blood vessel impinging on the nerve.

The question was asked whether long term taking of Tegretol could convert CTN

to ATN? Dr. Alksne responded that when taking a history from a patient he

wants to begin at the beginning of the first flash of pain no matter how long

ago. Where were you and what were you doing and describe the first pains as

exactly as you can remember them? Did the pain ever go into remission and

were/are there trigger points? The more the patient can tell the doctor, the

better the diagnosis.

Painful Trigeminal Neuropathy, he listed three types: Traumatic Nerve Injury

such as a car crash or severe fall, etc. wherein the cheek is damaged. After

healing there is sometimes pain or numbness caused by injury or scarring to

the nerve. The pain is localized to the area' there are no trigger points,

no remissions and no burning sensation. Tegretol may help the pain.

Dental Nerve Block Injury, Dr. Alksne finds that many times people complain

of pain after they see a dentist but he suspects they have forgotten that

they had a pain and went to the dentist to see what was causing it. No

matter what the dentist did, the TN pain would still be there. Of course, it

is possible for the dentist to cause damage to the Trigeminal nerve if he

hits a blood vessel when injecting Novocain but it should gradually get

better by itself.

Post Herpetic Neuralgia, Dr. Alksne feels is the worst one to treat. The

virus is always in the mouth and for an unknown reason some people get cold

sores from it or Herpes Zoster (Shingles). Blisters are distributed over the

Trigeminal nerve usually in the forehead and head. Now, if caught early,

there is a new drug Acyclovir that stops the virus but if not treated very

early, after the blisters leave, there is a burning pain as if the skin is on

fire. It doesn't respond to Tegretol however, Elavil is helpful. The bad

news is you don't want to further damage the nerve but cutting it. The good

news is that after a year the pain usually leaves by itself.

Painful Autonomic Dysfunction, which includes cluster headache, atypical

migraine, MS and histamine headache. In these there are autonomic changes

such as in the sweat glands, tear ducts, hair follicles, nasal stuffiness,

red eyes, plus pain. With the atypical migraine, the blood vessels behind the

eye enlarge. All kinds of things have been tried and regular migraine drugs

help. It does not benefit from Tegretol or any surgical procedure.

The last pain he mentioned was the glossopharyngeal nerve which is located in

the throat and tonsil area and gives shooting pain at the base of the tongue

and is like TN except TN is the 5th nerve and this is the 9th nerve which is

located near the 5th and with a MVD is totally remedial. Most victims are

very thin as they have trouble swallowing solid food.

That was from the newsletter and yes of course there are newer drugs that are

being used but the pain is still the same.

If you have any further questions, please feel free to ask.

love, hugs and prayers,

Foxy

[Guest guest]

I don't know what exactly is meant by " classic " TN (Trigeminal

Neuralgia), but I'm not convinced that there is never a connection

between ACM and TN. Firstly, it's not difficult to imagine that nerves

can be compressed in cases with a small posterior, which is often

found in Chiari patients. Secondly, there are a few medical abstracts

published mentioning both TN and Chiari (including glossopharyngeal

neuralgia). To see this, go to PubMed at:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed

and type the following ( " AND " must be upper-case):

neuralgia AND chiari

In addition to these articles, Milhorat's " Chiari I malformation

redefined " study states that of 364 symptomatic Chiari I patients, 7

with Chiari only had Facial pain or numbness and 50 with both Chiari I

and Syringomyelia had this.

Hope this helps.

Eurico

>

> > TN is caused by compression of the 5th cranial nerve. The

> > compression is usually caused by a blood vessel or sometimes a

> > tumor. TN is extremely painful. Suicide is often a concern for

> > those with TN because of the severe and constant pain. Is there a

> > connection with ACM? That is a good question.

>

> Again, I will tell you that there is NO connection between ACM and

Classic

> Trigeminal Neuralgia. On a " thin-cut " MRI it shows where the blood

vessel is

> compressing on the Trigeminal Nerve and it's compressed in at least

2 places,

> or it can be a tumor. This is causes by the artery being stretched

out over

> time. Why this happens in people under 50 they don't know yet. But

this has

> been known as the " old persons disease " and it's a condition NOT a

disease.

>

> The last pain he mentioned was the glossopharyngeal nerve which is

located in

> the throat and tonsil area and gives shooting pain at the base of

the tongue

> and is like TN except TN is the 5th nerve and this is the 9th nerve

which is

> located near the 5th and with a MVD is totally remedial. Most

victims are

> very thin as they have trouble swallowing solid food.

>

[Guest guest]

edesousa@... writes:

> by " classic " TN (Trigeminal

> Neuralgia), but I'm not convinced that there is never a connection

>

With Classic TN you canNOT eat, drink, smile, talk, brush your teeth, floss,

any breeze can set it off, you don't lay on the side of your TN, you don't

want to touch that side of your face with ANYTHING and you don't let anyone

else touch that side of your face.

If you can do all of the above, you do NOT have classic TN. This is a bolt

of lightening that comes from NO where. There is no pain before and only

shock afterwards. There is NO mistaking this excruciating pain.

No pain killers will help this pain only anti-seizure meds help.

CTN is one sided, most likely on the right side. It's very rare to be left

sided and even more rare to have it bilaterally.

I have ATFP and it is totally different from CTN.

If you want to know more updated info on neuralgia's, come to the convention

that will be in San Diego this year in November.

<A HREF= " http://www.tna-support.org/Conference/Abstracts.htm#Thin " >Trigeminal

Neuralgia Conference - Abstracts of Papers</A>

<A HREF= " http://www.sd-neurosurgeon.com/diseases/tn.html " >Trigeminal

Neuralgia</A>

Foxy

[Guest guest]

> but I'm not convinced that there is never a connection

>between ACM and TN.

I tend to agree with Eurico on this. If you study the brain, and all the

nerves and blood vessels and such that are in there, and add compression

from blocked CSF to that, you are apt to have many " neuralgias " .

Here is a site that taught me a lot on the nervous system, and opened my

eyes to just what all exactly the brain does affect.

http://www.geocities.com/HotSprings/3468/21-00.html#Ventricles

Start putting pressure on the brain, and there's not an inch of your body

that couldn't be affected.

Rainbows to you all,

Grammy