Hi Phoebe -Dave Letterman had TN a few yrs back and was off his show for a number of days and upon returning he explained the pain as the worst u can imagine - so there is a tv personality that may have some pull to help us - he is friends w/ Dr. Phil so this may b an avenue to go toward as Dr. Phil and his son Jay that produces the Doctors!! xo kris
Phoebe said:
Has anyone heard of Salman Khan? He has TN. http://indiatoday.intoday.in/video/salman-khan-undergoes-successful...
Hi Liz - i have written to Dr. Phil many x's yrs ago but it was for help w/ getting my children returned to me when my mother used my TN against me saying i had a drug problem (she didn't even know all the meds i took). Dr. Phil had a show on how his program decided who would b on the show and it said they have no1 on show that is getting counseling else where. The last time i sent something- i requested a show that focused on medical problems, like TN, that u have to take medications and how u can perform ur job just as some1 not on meds. If meds r taking correctly they treat ur pain and not give u the buzz effect that ppl get when they abuse these meds but each persons systems react different to medications also. I have read many comments that seem to b against going this route but any help is help so lets not give up on this. Do u know if there is a way we can forward these comments if we get permission from all that have written them or make a group for this cause and have every1 send a write-up on there back ground of suffering w/ TN. I am willing to help w/ anything u need!!! xoxox kris
There are new drugs and research being done behind the scenes all the time. Don't give up hope Liz. I would check out the reading on TNA on the Face pain info tab as Gloria suggested. Hopefully new procedures will come in five years.
Peace, Min
There was an article several months ago in my local newspaper about trigeminal neuralgia. Talking about what it is it's effects and the devastating pain one has to endure. My husband actually read the article and told me about it. It was refreshing to know the info is getting out there. :D
kimburlee said:
It would be great to have an awareness public event. I don't know if there are enough TNers of out there. I had heard of TN some time ago but not since. When I told my Pastor, he had never heard of it and so many people since then. I know that the Doctors did a small clip in TN and MVD surgery around the 15th of December but it was short. If Dr. Oz did a show it would be targeted toward vitamins and minerals. I did look up what vitamins and minerals that were good for nerve health and omega 3 vitamin E was one. I now eat my ground flaxseed in my oatmeal and I eat more tuna and sardines which are all rich in omega 3. Maybe the local newspaper would be a great place to start. It is such a disabeling disease!!! Maybe we should all make a date and call our local newspaper and beg them to do a story to bring awarness to TN. I pray for a cure. Kimburlee
I agree with you Cris, it is very hard to convey exactly how bad this really is. Having doctors explain the condition on a tv news program or having doctors quoted in newspaper articles is a more appropriate venue in my opinion.
Peace, Min
cris said:
There was a 30 minute program on our local news on Dec 12 about TN!! I was so excited to see this and my husband watched with me, as I am learning what this is all about as well as he is (4 months in). I tried to find the 'Medical Monday' show, but only found the transcript - http://www.newschannel5.com/story/16308969/facial-pain-and-trigemin... - with the doc's names and what was discussed. Of course, they are neurlogist / neursurgeons, so they are more interested in the surgical aspect; but one thing they mentioned on the show was that the procedures have a high percentage of 'fixing' the pain...with reading on here, I am not sure that is correct! - or at least, not a lasting cure anyway. I am all for getting TN out to the masses, but it needs to be done in a way that will help, not hurt with information that will deter from getting us REAL help instead of taking vitamins / doing alternative therapy to 'cure' what NO ONE can understand. I don't know about you guys, but it is SO VERY hard to explain what I am going through with others. My family is SO very supportive, but how do you 'show' how horrificly painful this is when you have no outward visible problems? That is why I am skeptical to ask people to exploit our disease when they themselves may not 'buy' into what we are really going through. The Medical Monday 30 minute show was GREAT, because it was from the perspective of neuro doc's that treat and 'buy into' how BAD this is. We have to be careful who we approach with this (TV doc's), as they could hurt us, without meaning to, in misinforming the public and not giving a true pic of TN. The newspaper bit is a great idea, and again, getting more local TV news programs to showcase this disease with professionals that deal with TN will be huge! I am willing to do whatever I need to - ...
I wonder if we sent a letter to SAG regarding our disease and the desire to locate a widely known theatrical presence who suffers from this condition, or has a close family member that does, if this would be helpful? There must be someone fitting that bill. As I have written before in another thread, I am amazed at how many people I have run into that have, or have, a family member with TN.
There is also a website, http://www.disabled-world.com/
That lists famous people with disabilities.
Micheal J. Fox represents parkinsons, Russell Brand has bipolar, Stephen Hawking struggles with MS, etc.
I sent a segment suggestion last night! Best. Johanna
As u well know, I've had this disease for many yrs & there was very little research back when. I'm excited when I read of ppl who have contributed to the new research & feel confident that a cure may be in sight! Over the years, I feel like I've heard it all. That is, as far as gluten free diets, acupuncture, vitamins, and well, the list could go on here forever.
To quote the book, Striking Back, "tn is a pain that has no boundaries." It's an equal-opportunity problem that has affected people from all walks of life for centuries including Jefferson Davis, the confederacy's only president, Norman Fell (Three's Company), Russian composer, Sergei Rachmaninov, Gloria Steinem (also mentioned in thread), and the list goes on. Montel Williams spoke of his tn on his shows quite often. If u google him u will find much information that he has written.
Also, If others would get on the TN
A site, as mentioned, a newsletter would be sent to them. In one issue I received in Fall, 2009, the headline story reads: "Does the Answer Lie in Stem Cells or Gene Therapy?" So, there is much research going even two yrs ago!!
Richard A. "Red" Lawhern said:
Liz:
Dr. Oz has nothing of substance to add to our cause. The book to which he has recently contributed advocates for a low-carb diet plus Vitamin B-12 infusions as a "cure" for TN -- despite a lamentable lack of medical evidence to support these wild claims. From probing his profile on the Web, I find that Dr Oz seems to be rather widely regarded by other medical professionals to be at best controversial for his business ventures into alternative medicine, and at worst an outright fraud for his own financial gain.
If you want to draw real attention to Trigeminal Neuralgia and facial neuropathic pain generally, then contact Sixty Minutes and ask them to run a segment on it that is better than the one to which the TN Association contributed last year. A major failing of the TNA effort in this area of public awareness was reinforcement of the stereotype of TN as "The Suicide Disease" -- an unfortunate and possibly self-fulfilling prophecy that does nothing to advance research on the problem.
Regards, Red
Gloria Steinum writes about it in this article, you have to scroll down to middle of the article... I never knew she had a bout with this.... not sure what her treatment is, or if it was a one time incident, but I love her insight.....
Am I missing the link?
Hey guys,
American Chronic Pain Association International Integrative Medicine Day is January 23.
Check out the ACPA web site
http://motherjones.com/politics/1995/11/gloria For some reason, it erased it when I hit reply!
crystalv said:
Am I missing the link?
Thanks Lisa. I feel the same way she does about it. "It's a very sobering disease..."