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User: wolfdancer
Date: 2011-03-15 08:15
Subject: A on line Event Jhon Hopkins
Security: Public

It is taking place on Wednesday, March 23 between 7 p.m. and 8 p.m. (EST). More information and details on how to register can be found at http://bit.ly/eXT4ce. Dr. Lim will give a 20 to 30 minute presentation and then will answer questions submitted by people via email viewing the presentation. We think that this could be a great forum for people to get answers directly from a physician. Would you be willing to share information about this online seminars with members of the DC support group?

Also, would you know how I could share information about this webinar more broadly with TNA members, such as on the Facebook page? I want to get permission before posting something. I emailed the TNA through the Contact Us form on the main web site on 3/2, but haven’t heard back from anyone. Any advice you can provide is greatly appreciated.

Thanks for your consideration, Morag.

Morag Muirhead
Marketing Manager
Johns Hopkins Medicine Marketing and Communications
901 S. Bond St., Suite 550
Baltimore, MD 21231
Tel: 443.287.8556
Fax: 410.614.7523
Email: mmuirhe1@jhmi.edu
Follow Johns Hopkins Medicine on Facebook, Twitter and YouTube

cut and pasted in part from a letter to the leader of our DC TN Suport Group.

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savaaha posting in mairondil
User: savaaha
Date: 2009-06-19 00:31
Subject: huh? what?
Security: Public
TN is baffling and plain wtf some times. Tonight, if I flick the tip of my tongue on my bottom front teeth I'm feeling it tingle UNDER MY CHIN.
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User: wolfdancer
Date: 2009-06-18 12:04
Subject: Any one have Atypical TN?
Security: Public
I am 51. I started having pre tn about 45, was not beleaved as i was too young, and had very odd sympyoms. After 7 mts of testinng and not being treated I was put on Topamax. A number of drugs and things that did not work or worked just foor a short wile, I am on topamax Bacafin and trepidal.
I have atempted a number of alternitive treatments of withs Uper cervical cropraccter.
He sad to say is no longer doinng this.
right now I am using Q10, flack seed. fish oil, b multy L l-lystine. Tauran is helpfull if I am havinf face pain (red bull on the run) or caps with b 12-9-multi.
Has any one been diagnosed with a Crainal leak as the rout of there TN or contrubiting to it?
I have hand Migrand steming from the back of my neck ever since a car acident when I was hit from behind. thta was about 26 years ago.
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Savaaha d'Loren posting in mairondil
User: stripedpony
Date: 2009-06-01 23:14
Subject: Tn and formaldehyde?
Security: Public
So I met this lady today and like myself she had also lived in a FEMA trailer. She has suffered nerve damage that has apparently been linked to the formaldehyde in the trailer. Shes convinced my TN is also caused by it so much so she wants me to video myself talking about my TN and living in the trailer. In addition she works for a lawyer who is pursuing FEMA for people sickened by said trailers. She wants me to go see the lawyer tomorrow.
What to I think? There might be a link but in this woman all Im seeing are the $$s in her eyes. Shes convinced shes going to get millions. Anyway, to the point. Has any cause for TN ever been established? Any outside chemicals or substances thought to contribute?

Im going to go talk to him but Im certainly not holding my breath on anything.
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St. Jude's Despair posting in mairondil
User: ghymoreid
Date: 2009-02-03 01:02
Subject: Dental procedures?
Security: Public
Music:Immigrant Song - Led Zeppelin
Hey. I've finally found a dentist through the public system who has to treat me, but so far doesn't seem daunted by my multiple diagnoses (Ehlers-Danlos Syndrome, TN and TMJ). Or at least I thought I had. He's certainly gone away and done his research about the EDS, but when I mentioned my paranoia regarding upsetting my trigeminal nerve during one of the many procedures I've got lined up over the next few weeks (two extractions and quite a few gum-line fillings - EDS causes chronic periodontal problems), his response was to shrug and say he really had no idea about how what he planned to do would affect it. This understandably does not fill me with hope. Do you have any recommendations of websites/books/articles I could take to him that might help him understand that I'm not being silly or paranoid about not wanting to piss off this nerve any worse than it already is? Or even any suggestions about what I can do myself to stop anything untoward happening? I've read one site which suggests upping my TN meds (gabapentin and amitriptylene at the moment) before and after the procedure, as well as taking pain medication (dicey given the ones I'm already on for the problems EDS causes), but do you have any other helpful tips? I've not seen a dentist for six years since my last one told me not to come back once I was officially diagnosed with the EDS and the TN's developed in the intervening time, so I've not got any experience of this myself at all.

Any help appreciated.
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Savaaha d'Loren posting in mairondil
User: stripedpony
Date: 2008-12-12 03:17
Subject: fly by TN rant
Security: Public
My brain thinks I have a toothache. I know its not a tooth... THAT TOOTH WAS PULLED IN 2005!! Its a socket. arg I hate this!!
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Savaaha d'Loren posting in mairondil
User: stripedpony
Date: 2008-12-03 01:10
Subject: Percutaneous Glycerol Rhizotomy??
Security: Public
has anyone had any experience with this? The neuro consult today went in that direction instead of the Gamma knife... I really am not sure about this. I don't exactly like the thought if some of that glycerol ends up in my brain stem. And while the doc said he had performed over 100 with out complications he admitted its been so long since he did one that he didn't even know if he could get the right needles or the right glycerol.
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Savaaha d'Loren posting in mairondil
User: stripedpony
Date: 2008-11-14 23:37
Subject: 2 things
Security: Public
1. does anyone else have 2 types of pain? I seem to experience this.
1st kind is an outward pain, the kind that hurts when someone/something touches my face.
2nd is an inward pain. If I touch my face I will feel nothing but my face hurts in general.

2. Is anyone able to trigger numbness during the 2nd sort of pain? Ive found if I work my jaw and mash on the inside of my jaw with my tongue. I can sometimes do it.
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Meghan posting in mairondil
User: nutmeg235
Date: 2008-10-27 20:14
Subject: Chicken or Egg?
Security: Public
Hey everyone,
I have atyptical TN (left side only), diagnosed in 2003, started in 1999. My TN is triggered by stress and irritated by certain frequencies and pressures (being close to a microwave, or in an indoor pool).

The past two months I have also been getting debilitating migraines. I noticed today that I was having TN pain (feels like there is cotton or an ice pick in my ear), and then the migraine. I originally thought I had an earache, forgetting about the TN, even though its on the same side.

My question is has any one had something like this happen? Like a TN pain and then a TN attack!? I'm trying to discern if this is something I should make an extra neuro appointment. I'm happy with my medicine level currently (60 mg of cymbalta once per day) after being on tegretol for years.

Thanks, everyone.
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Brittany posting in mairondil
User: x_memoirs
Date: 2008-10-25 15:40
Subject: Post op.
Security: Public
I was released from the hospital yesterday afternoon. The MVD surgery was October 21. There isn't any TN pain, and they're weening me off of the Tegretol. I've pulled through the surgery like a trooper, they said. For such a serious surgery, I'm not in any pain. My neck is a little stiff and my right ear feels like it's stuffed with thousands of cotton balls (my doctor told me that was normal and it'd go away in about a month). I was moving my head around about 24 hours after the surgery. I was determined. I like sleeping on my stomach, so I had some motivation. So far, the surgery was worth it. I'm not diggin' the thousands of cotton balls in the ear feeling, but everything else is okay.
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my journal
March 2011