Trigeminal Neuralgia

[Guest guest]

I have been reading all the posts on the head pains and trigeminal problems

and can only say you all have my sympathy who are experiencing this pain. In

about my sixth to ninth month of treatment, I experienced the same. . . .it

was the most horrible part of Lyme! (as far as pain is concerned) I was like

some of you--just wanted to see anyone who could operate and remove the pain

at any cost! My visits included an oral surgeon, several dental visits,

cranial sacrial therapy, neurologist, ENT doc. to see if something may be

happening in the ears, and on and on, along with several tests. Neurotin and

tegretal are both used for this along with another dylantin (I think). A gal

in my area with severe Lyme was so bad that she did have surgery and they

drilled a hole in her skull and chin and placed a teflon plate around the

nerve and said it would never happen again--also saw what they called

" adhesions " along the nerve (we of course know these were just a clumping of

spirochetes), but the neurologist who is not literate on Lyme said he never

saw anything like this prior! Anyway, it is 1 1/2 year later and guess

what--she called me and said it is back--now is fine as she is back on meds!

(I say the surgery was useless, but if the pain was that bad, perhaps it was

worth it all to her at the time--she sees a doc who has her off/on meds.)

I did find that cool weather or changes made things much worse--put ear plugs

in when I went out when colder, and also several told me that ultram and

anti-inflamm. seem to help. My pains were about 15-30 mts. in duration and

would wake me from a deep sleep in tears, even crying when in a restaurant at

times as once they hit, they were almost intolerable. They DO go away!!!!!!!

Please just hang in there--I found with the cranial therapy it got much worse

as anyone pressing on those nerves seemed to set them off even more. Hang in

there, and just know it is temporary!!!! I just ache for those of you going

through this at this time. God bless!!!!! Sue in MI

[Guest guest]

Oh I remember that pain,it lasted for two weeks. I tried everything too.

1600 mg of Ibuprofen didn't put a dent in the pain. At the time I was

working as a bartender (2nd job) and kept rubbing Barcardi 151 on my gums

and any alcohol that might be stronger. Nothing helped until I got the

Tegretol. Then it was like magic. It hasn't returned as bad, but I still get

occasional bouts, but they don't last long, but scare the beegeebers out of

me, you know, " oh no here it comes again " . It was the worriers pain I ever

had! Vicki

>From: Sue929@...

>

>I have been reading all the posts on the head pains and trigeminal problems

>and can only say you all have my sympathy who are experiencing this pain.

[Guest guest]

Comments interspersed.

S S

In , " awhi2110 " <awhi2110@...> wrote:

>

> Hi all

>

> My best friend seems to have Trigeminal Neuralgia - terrible pain in

> the right side of the jaw, sometimes forehead above the eyes etc.

*I had trigeminal nervwe pain recently after horrible dental work. I made an

emergency apt with an accupuncturist which helped considerably.

> She has anorexia,

*This is often related to zinc deficiency.

gluten-intolerance, irritable bowel, has suffered

> headaches since her late teens (is now 42), had to have a

> hysterectomy and pelvic reconstruction at 39yo due to complete pelvic

> prolapse, as a very young child her parents thought she may have

> Autism although that concern didn't persist, she had

> intermittent 'attacks' of lots of mouth ulcers (yeast?).

*Suggest that she get a DDI hair elements test and apply counting rules. How

many mercury amalgam dental fillings does she have?

She is

> considering going down the medical route to investigate the possible

> neuralgia which will likely involve lots of tests and ultimately some

> full-on medications to try to control the pain. Because of where I'm

> at I am personally convinced she has amalgam illness and that

> addressing her mercury toxicity may well be the long term solution to

> her (many) health woes. I'm torn between trying to convince her to

> investigate her mercury toxicity or keeping out of it - maybe I'm

> wrong and let's face it, it's not a quick fix.

*But if she goes the mainstream medical route she'll be facing Alzheimer's,

Parkinson's or some other manifestation of mercury toxicity. Do you have a copy

of Amalgam Illness that you can let her borrow? Are you in a position to offer

a gift of a hair test?

Members of this group

> must face this dilemma - what do you do? (Sorry if this is a bit off

> topic.)

>

> Alison

>

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[Guest guest]

I would say, most likely without a doubt, you have lyme disease.

My husband sufferred excruciating pain for several years with TN. I had him to

several neurologists, s Hopkins, Hershey Med. etc. They had him on

antiseizure meds, lyrica, vicoden, one even put him on antidepressants which

made him almost suicidal after one dose. He even had the radiation blasting of

the nerve and just got worse and worse. He became unable to work and at one

point couldn't even drive.

I finally found an alternative practitioner that treated him with something

similar to the Cowden Protocol by Nutramedix. Within a week his pain decreased

and finally has disappeared completely.

I am certain if I had not gone that route with him, he would not be here

anymore. This man was dying before my eyes at 37 and could no longer function.

I wish you the best of luck with it.

Miss

>

> Has anyone had a bad case of trigeminal neuralgia on one side of the face,

below the ear lobe on the jawbone? It just came out of nowhere a week or so ago,

and sometimes when I eat or chew the stabbing pains are excrutiating. it feels

like electrical shock big time pain. When it goes away my jaw and all around

that area is still sore and still aches.

> I been doing some research on the net and could it be the MS attacking the 5th

cranial nerve?

> I don't know what I did, but I never have had anything like this before in my

20 years of MS.

> Any words of wisdom out there or any ways to nake this go away.

> thanks

> keith

>

[Guest guest]

My doctor also gave me SAMENTO by nutramedix. I have Lyme....i just started it a week ago....i will let you know how it works for me.

best wishes,

Terri

From: donmissham <donmissham@...>Subject: [low dose naltrexone] Re: trigeminal neuralgialow dose naltrexone Date: Monday, August 31, 2009, 4:17 PM

I would say, most likely without a doubt, you have lyme disease. My husband sufferred excruciating pain for several years with TN. I had him to several neurologists, s Hopkins, Hershey Med. etc. They had him on antiseizure meds, lyrica, vicoden, one even put him on antidepressants which made him almost suicidal after one dose. He even had the radiation blasting of the nerve and just got worse and worse. He became unable to work and at one point couldn't even drive.I finally found an alternative practitioner that treated him with something similar to the Cowden Protocol by Nutramedix. Within a week his pain decreased and finally has disappeared completely. I am certain if I had not gone that route with him, he would not be here anymore. This man was dying before my eyes at 37 and could no longer function. I wish you the best of luck with it.Miss>> Has anyone had a bad case of trigeminal neuralgia on one side of the face, below the ear lobe on the jawbone? It just came out of nowhere a week or so ago, and sometimes when I eat or chew the stabbing pains are excrutiating. it feels like electrical shock big time pain. When it goes away my jaw and all around that area is still sore and still aches.> I been doing some research on the net and could it be the MS attacking the 5th cranial nerve?> I don't know what I did, but I never have had anything like this before in my 20 years of MS.> Any words of wisdom out there or any ways to nake this go away.> thanks>

keith>