"Hi, John.
If you check in here, I'd love to talk to you sometime. Please write to me.
You said some things in the ATN chat that I would like for you to expand on. You've had this long-term. I feel I need your…"
We are patients living with Trigeminal Neuralgia, here for your support.
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john quill
- Male
- Tonawanda, NY
- United States
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john quill's Discussions
A Very Powerful Tool Indeed
Started this discussion. Last reply by Pat Feb 25, 2011. 2 Replies 0 Likes
I have that very powerful book: _Between a Rock and a Hard Place_ sitting atop the table in front of me, a copy that has been personally inscribed by the author, Aron Ralston himself. The recent…Continue
The Links that Hold Us Together
Started Jan 13, 2011 0 Replies 0 Likes
I've seen some interesting discussions recently about children who are diagnosed with Trigeminal Neuralgia, or as in my own case, Atypical Trigeminal Neuralgia. For me, an accurate diagnosis only…Continue
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Latest Activity
john quill replied to Aleida Johnson's discussion Migraines"Since quite a few people here do seem to have Migraines, I thought it might be good to list out the various '-triptan' medications, by generic name, as well as Brand Name, since to my knowledge, the only -triptan to come off-patent in the…"
john quill replied to Luke's discussion Atypical Trigeminal Neuralgia Wikipedia Entry NOW ! in the group Atypical Trigeminal Neuralgia"Web sites that provide information for specific illnesses or conditions usually begin with good intentions, and as time goes on, several things can happen. People with ONLY a profit motive can sometimes take over a community. Time itself can erode…"
john quill replied to Aleida Johnson's discussion Migraines"The dilation of blood vessels was an extremely popular theory of migraine for many decades, but it has been displaced by much newer, and probably more accurate theories about a spreading neurological "storm" in the brain, specifically in…"
Scott Orn left a comment for john quill"Hey John, hope you are well. When you get a chance, drop me a line so we can chat."
john quill replied to Aleida Johnson's discussion Migraines"The fact that quite a few patients who are diagnosed with TN and especially those diagnosed with ATN also have migraines does seem to "point" to some kind of correlation, maybe the Trigeminal Nerve and all of its mysterious 'feedback…"
john quill replied to Aleida Johnson's discussion Migraines"I've had both "common" and, less frequently, "classic" migraines at least since my Atypical Trigeminal Neuralgia began in 1972. It's possible that I had the migraine headaches even before this, but I do not recall…"
john quill commented on NickyD's blog post So very tired"Hello Nicky,
Ah, whether to tell (the workplace), or not to tell. It's a rather HUGE decision, and the fact that it gives you pause is good, because it means you grasp what might be at stake.
Without knowing you or the…"
john quill commented on Michaela's group For TN Patients in Their 20s"I have not seen many posts from you "kids" all summer (anyone uder age 35 is a "kid" to me! LOL
But I know that all of you have not been cured or moved on, so please don't forget to stay in touch, especially if…"
john quill replied to Luke's discussion Atypical Trigeminal Neuralgia Wikipedia Entry NOW ! in the group Atypical Trigeminal Neuralgia"The ATN wiki entry reads very nicely! I have to tell you that twenty or thirty years ago, I would have done almost anything to have access to such accurate information. I used to wait weeks, and spend hundreds of dollars to get Medline Searches…"
john quill replied to OverIt's discussion Need Advice!!!"Hello Over,
My history has quite a bit in common with yours, and what I found about half way through my current four-decades-long (so far) battle, is that if you ask long enough and hard enough, you will probably find a doctor who will cut…"
Chris K. left a comment for john quill"John, I just want to say how much I enjoy your writing. You have been dealing with this pain nearly as long as I have been alive and I am inspired by how you are choosing to face it directly without shying away from the more frightening…"
john quill replied to Vonny's discussion Flying From UK to USA"I got my nephew some Noise Canceling Headphones before his deployment to Afghanistan, and he LOVES them. He encouraged me to get them for myself, as I am very sensitive to all kinds of noise (I have very bad "common" and sometimes even…"
john quill commented on Grace Mackay's blog post The Guilt of Neuralgia........"All lives contain phases of growth, expectation, realization, etc. I regularly visit and play cards with a much older man in a nursing home, and I recently joked with him that it seems like we spend half of our lives accumulating (or at least trying…"
Profile Information
- Please indicate your membership type
- ATN Patient for 39 years
- What type of facial pain do you have?
- Type II (Atypical)
- What treatments have you undergone (or will undergo)? With what success?
- All in all, I've had numerous x-rays and at least six MRIs over the decades, and the latest (2010) doctors are reluctant to perform either an MVD or Gamma Knife procedure on me. Way back in 1992, I had a surgical operation performed on my c-spine (c5/6) which has been what I consider to be a "Failed Neck Surgery" as all of my symptoms of ATN and migraines are now the same or worse. I spent 30 of the previous 40 years without an accurate diagnosis. It was only when I was going for a Third Opinion during my attempts to get a Disability Claim in 2001 that a neurologist finally uttered the word "Atypical" (I was very familiar with Trigeminal Neuralgia, but the symptoms for this didn't "fit" me). I am so GLAD to see that Atypical Trigeminal Neuralgia finally has its own "wiki" entry!
- Please share your TN story with us...(How did your pain first emerge and then change over time? Were you ever misdiagnosed? Do you believe your pain was caused by dental work? Have you had unsuccessful surgeries or medications?)
- As of September 2011 it will be 39 years of living with severe, episodic Right-Sided (mandibular) nerve pain for me. These episodes of severe pain began in 1972 after two years of football. I also have migraines, which could be related by cause, but of course my ATN symptoms are different. All of my ATN episodes are Right-sided at the mandibular area. I get four or five episodes per month, that can be as short as two hours, but more often last for 72 hours or more. I've spent every Birthday, Holiday, Thanksgiving, Christmas, etc., alone since 1985. My former wife and son's Mom died a few years ago in an awful car crash, and since my son lives three times zones away, I didn't make it to this funeral. While I am totally disabled by this condition, I do have an occasional "good" day, and then I can do many things. But there is never time to plan for these, and sadly, one of my MAIN indicators that a very bad "attack" is coming is when I feel "too good" (i.e., absence of pain is usually a sign of an impending severe episode or attack). Still, I try to remain active, I teach Chess and Cribbage to kids and adults, and I frequently visit elderly people in nursing facilities to play Chess or Cribbage. After four decades of living with this condition, I am very good at managing my symptoms and medications, and I am here to help others to the best of my ability.
- Would you like to recommend a doctor, therapist or a hospital?
- My Primary Care Physicians (I've had only TWO in over twenty-five years) are heroes.
- Why did you decide to join (multiple answers okay)?
- Support: I want to help support others dealing with this
"I suppose that there's only one thing more profoundly disturbing than spending the past ten thousand days and nights alone . . . and that's spending the next ten thousand days and nights alone."
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John quill's Blog
as miserable as i am (my flowers still bloom)
Posted on November 12, 2010 at 1:00pm 4 Comments 0 Likes
I was forced to sell my home back in 1999 because of my illness. This home had the most beautiful flowers, surrounding a small koi pond, and I spent a lot of time caring for them. I wrote the following while living there in 1995:
Continueas miserable as i am (my flowers still bloom)…
Comment Wall (4 comments)
- At 12:05pm on March 3, 2012,
Stef said… Hi, John.
If you check in here, I'd love to talk to you sometime. Please write to me.
You said some things in the ATN chat that I would like for you to expand on. You've had this long-term. I feel I need your guidance.
Please, drop me a line.
All the best,
Stef
- At 12:15am on August 5, 2011, Scott Orn said…
- Hey John, hope you are well. When you get a chance, drop me a line so we can chat.
- At 6:43am on June 27, 2011, Chris K. said…
John, I just want to say how much I enjoy your writing. You have been dealing with this pain nearly as long as I have been alive and I am inspired by how you are choosing to face it directly without shying away from the more frightening aspects of a long-term condition. I am also impressed with how you are finding ways to make the most out of life. You have a wisdom beyond your years and I so appreciate your sharing your perspective with us. You've certainly given me a lot to think about.
Take care,
Chris
- At 3:26pm on February 27, 2011, Stef said…
- John, I like to try to drop in on new members. Some fall through the cracks when I am not online. I just wanted to say "hello" and welcome! Consider yourself cordially invited to our ATN Group, as well! There is a lot of good info and support there too. Cheers!
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