Trigeminal Neuralgia Support Group

This is interesting. I had the opposite thought. I have been getting cold sore for years.
Was diagnosed with TN in the spring of 2008 and went into remission prior to taking any medication.
In April of 2009 I was developing a cold sore so I took a couple of of the anti-virals the doctor had given me to have on hand. My cold sore disappeared in a day or two and lo and behold my TN started up again. It may be total co-incidence but it did make me wonder whether the two are related. Ihave not had another cold sore since then.
I have not had herpes simplex since that time.

Hi Ingelo,
Thanks for your story. I'm so sorry your TN is back. My husband ( a doctor) is looking further into the TN/ herpes link. I'll let you know what I find. Until then, may you be well.
Ronnie

In 1997 we read the same idea about herpes when my husband had TN for 12 years. That didn't prove true. The Dilantin, Oxycotin and Neurotin didn't help either.....just buzzed his thinking so he couldn't work. In 1995-96 the pain was so bad he couldn't leave the house or work.
In Feb, 1997 someone told me about Upper Cervical Care. This is correcting the top bone his head sat on. His head was forward in front of his shoulders, with a bulge between his should blades in the back.
Anyway.....as a last resort, we located one of the 1600 UC DC's in our state, and 11 days later my husband was pain free. His neck curvature returned to normal over the years, and he is the healthiest 71 y/o our local doctor has ever seen. No med's or surgeries since 1997....only Upper Cervical check ups.
TNA has a CD for $9.95 where Dr. jamie Werner or Warner explained TN with AMA charts which show the trigeminal nerve comes up thru the outer holes of the atlas bone, so when the atlas (c1) shifts from a traumatic event, the nerve is impinged and creates a negative nerve flow or spasms. Very interesting lecture.
At the end, several more TN victims stand up declaring they are now pain free. Amazing!!!!
Consider locating a Upper Cervical DC who will xray your head and c1 relationship and tell you if that is the problem. My husband wrote what time, Tuesday? in 2004 to share his story publicly. We've personally had multiple TN patients call, email or write us over the years saying UC worked for them, too.
Blessings!
Rhonda Tomasi

Hi Rhonda,
What a wonderful success story for your husband. Congratulations! Thanks for your advice about upper cervical help. Right now, I'm on the herpes track, but at some point may check out your suggestion also. Thanks for your care. May you and your husband be well.
Ronnie

I think when you refer to herpes - perhaps you mean herpes zoster, which is also known as shingles affecting the face!? There is lots of information on google if you type: herpes and trigeminal neuralgia into the search. The same if you type in: shingles and trigeminal neuralgia.

I found this post on a forum quite interesting:

" 08-21-2007, 11:04 PM
Unregistered
Guest Posts: n/a

Re: trigeminal neuralgia

--------------------------------------------------------------------------------
I never heard of this excruciatingly painful condition until I got it! I thought I had five teeth in a row all in need of a root canal. Gosh, it was awful, and none of you will be surprised to hear pain meds didn't help much.

I had shingles on the right side of my mouth and throat, they subsided, then this pain began. My endodonist hit it right on the head, because HE once had this himself -- neuralgia triggered by shingles (or any form of herpes). He got shingles on one side of his body, then as soon as the shingles subsided, he began experiencing stabbing pains with every step, on that same side. It lasted an entire year!

All of a sudden I started hearing about this condition everywhere. It seemed like everybody knew about it but me! There is no need to fear taking more meds, because the meds they give you for this target nerve pain specifically and don't alter your state of consciousness one iota. I take Lyrica and I've never had the problem since. I also have a prescription for Valtrex, an anti-viral, which I take the second I feel those shingles coming on. The official name of this condition is "post-herpetic trigeminal neuralgia," and Jackie, I CAN'T BELIEVE they never heard of trigeminal neuralgia at that hospital!! Take heart.

Rebecca"

Taken from: http://forums.wrongdiagnosis.com/s...

So I looked up symptoms:

http://www.shingles.com/info/about...

The thing is, I think you are meant to get a rash on one side of your face. I have never had a rash.

Weirdly, I have looked into herpes/shingles before because I seem to often get bad bouts of TN when I get a virus that affects my head. I seem to get a viral infection every so often that causes me to have ear pain/popping in my ears and a heavy feeling in my head/face almost like a cold, this then leads to pain in my face as if I am getting sinusitis and finally becomes what I have been told is TN. I am not 100% convinced. It seems odd that I frequently get this same pattern... frustrating isn't it?

Vicky

I just found this:

"Very occasionally, shingles pain occurs without a rash. This condition is known as zoster sine herpete. In the absence of a rash, pain in the chest or the back may be so severe as to occasionally be mistaken for a heart attack, a lung infection or spinal problem."

http://www.healthscout.com/ency/68...

Not sure if same applies to it only affecting face?!

Hi Vicky,
Thanks for your input. I'm checking out the herpes lead, but I may just be wishful thinking. Hope you're feeling much better than when you moaned a few days ago. Take care.
Ronnie

Well I think it is worth leaving no stone unturned! I mean wouldn't you regret it if you didn't pursue this and found out later it was related to your pain?

I am still battling the TN. I have gone back on Tegretol and just ordered a prescription as old one was running out. I will stay on it, until things have gotten under control and been that way for a while again. It definitely has gone down since I have been taking Tegretol for some days, but am still getting breakthrough pain. I will get there!

x