Michatki ,
I hope this helps you and others that are "long distance"--

American Pain Foundation: Trigeminal Neuralgia
http://www.painfoundation.org/page.a...045.htm&menu=1

Trigeminal Neuralgia Association
http://www.tna-support.org/

Trigeminal Neuralgia Association Australia Inc.
http://www.tnaaustralia.org.au/

Trigeminal Neuralgia Association of Canada
http://www.tnac.org/

Trigeminal Neuralgia Association UK patient support
http://www.tna.org.uk/



these are from the list of useful websites thread which has many more links and helpful info for lots of us here s the link to that thread

http://neurotalk.psychcentral.com/thread169.html

.... I will see if I can get Ella to check in ...
PEACE
BMW

Well, BMW summoned me on Facebook. Sorry for not being around much. Often people from these boards and the BrainTalk communities will contact me through email if they have any questions or comments about my MVD diary. I answer all my emails. My address is ellacjn@hotmail.com.

There is a huge support community on Facebook as well. Both sufferers and family members from all over the world, post support and ideas. When we are going through a rough patch, ultimately we are alone in our pain. Since there is no outward sign like bruising or blood we look perfectly fine. Only a fellow sufferer truly knows the desperation of this relentless affliction and although they can't help your pain, they can hold your cyber hand from anywhere in the world. I would be happy to be "friends" on Facebook with any TN sufferer and introduce you to the other members. Here is my link, just let me know you are from here. http://www.facebook.com/ellabc
It's a great place to go when you are hurting in the middle of night all alone. Because of time zone differences, you are never alone in cyberspace.

Michatki,
I'm sorry for your suffering. You did not mention where in Canada you reside. I know there is a group meeting in the Toronto area on the last Sunday of each month. Here is the email address of the person who sends out notices about those meetings. Jan@catna.ca. If you are in the GTA, contact her for further info. I have never attended one of these meetings so I cannot comment on how they work or how big they are.

At www.tnac.org you can click on "support" in the nav bar on the left side and it will give you the links to all the support groups in the difference provinces.

As for me, my TN has been behaving. Since that weird blip in June, it has been quiet. Going through perimenopause, I find a definite correlation between my TN and hormone surges. Although I do not get shocks anymore, sometimes, before my [irregular] period, I can experience a sensitivity that feels like it is about to be a shock, but it does not come. Sometimes it comes in the form of a premonition. I know that sounds strange, but I actually get a premonition, just before one of these sensitivities. A subtle reminder that this monster is lurking in my head somewhere and keeping me in check, so I never get to forget or take it for granted.

Since my MVD in 2005, I have been able to get on with my life. I work full time, I am still writing my advice column and now have embarked on writing a novel.

I know most people posting in these threads have failed MVD's, because the ones who have successful ones, can't wait to put this chapter behind them and never enter anything which reminds them of their suffering. This is why I posted this thread in the first place, so others can see there is hope. The numbers don't lie. For Classic TN the success rates are in the high 90th percentile. As for ATN, I think each case has to be looked at individually to assess the success rate. But the fact still remains, in the hands of an experienced surgeon, you may have a good chance of beating this thing. The surgery sounds far worse than it actually is. Recovery time is a lot shorter than going for plastic surgery which people do all the time these days.

I lost 13 years of my life being afraid of MVD surgery and living on high doses of Tegretol and pain. If I had only polished up my crystal ball, I would have not lost those years. Doctors always said, "If the meds work, stay on the meds", so I lived in a Tegretol fog for all those years.

Please feel free to contact me on Facebook or by email. I will do my best to answer any questions about the surgery or just talk and offer some friendly support.

Ella

PS Thanks Tina for reminding me to come back.

July 22, 2011
6 year anniversary of my MVD

Well today is July 28th. My MVD anniversary came and went and I didn't remember. That's huge!! Maybe the emotional hold is loosening it's firm grip?

This year has been quieter. Very few shocks and even those were so mild the average person wouldn't even realize it was TN.

Because of this diary I kept while I was recovering, I have people writing me all the time, from all around the globe (ellacjn@hotmail.com).

TN forums are a great place for support, but let's face it, most people with successful MVD's have no reason to stick around. They want out and never want to look back. Who could blame them? What that leaves is an unbalanced view of MVD success rates.

I urge anyone who is thinking about taking the MVD route, to look further than this or any other forum. Look at statistics, speak to neurosurgeons, read textbooks. It's serious and it's scary, but for the right candidates it may give you back the life you've lost.

Whether it be surgery, medication or another procedure, I only wish that everyone could be lucky enough to find the right solution to live pain free. It's a luxury most people never think about.

Tomorrow is my birthday, and I can't think of a better gift than the life Dr. Michael Tymianski of Toronto, gave me six years ago.

July 22, 2012
7 year anniversary of my MVD

This year has been very typical for me. Very few shocks. Still had my usual small flair in April, but nothing that required meds.

This is the first year I am in peri-menopause and guess what girls, without that monthly rise and drop in hormones, the difference is extremely noticeable. Far fewer problems. Now all I have to be concerned with is the weather and atmospheric pressure.

For all of you that are going through MVD this year. Good luck. I know what a hard decision it is to make, but once you make it you are on to a new beginning to an old life.

I still know that I have TN. I always will. The memories and thoughts are never going to go away. You can't suffer so intensely and so long and just wake up and forget it existed.

Whether it be surgery, medication or another procedure, I only wish that everyone could be lucky enough to find the right solution to live pain free. It's a luxury most people never think about.

July 22, 2013
8 year anniversary of my MVD

I want to keep updating yearly, so you know the long term effects of MVD. I can tell you that as of my 8th year MVD anniversary, everything is still good.

Is it perfect? No.

Is it manageable. 100%!!

As usual, I seem to have my flare ups in the transitional months between Winter and Spring. This year it was late April. I took 1 Tegretol to get me over that day of shocks and it was gone the next day. I wish I had answers as to why this happens, but I don't.

So instead of fighting it, I make sure I still have some Tegretol around and I cope with that day or two.

Other than a couple of bad days, my year is wonderful! No meds, no pain, no TN.

The smaller twinges have tapered off completely since I get closer and closer to menopause. It's because my hormones are not fluctuating pre and post menstrual cycles. You men have it good!!

So I go about my life, still never forgetting that I have TN.

This year I had to have a fair size cavity filled exactly where my shocks used to be, in my upper left back molar. To say I was petrified would be mild. It went off without a hitch. No problems during the procedure or after the freezing wore off. That was a big thing for me.

So for all you people thinking about MVD. Remember, the unfortunate people who post about failed MVD's are not the norm. The success rate is in the high 90%'s. It's just that those people move on with their lives and you don't hear from them on these forums.

This is why I come back every year, to tell you there is hope for a normal life.

If you have Typical or Classic TN and you put yourself in the hands of an experienced neuro surgeon with a proven MVD success rate, you will have your life back. For ATN, the success rate is a bit lower and more individual.

I wish everyone a pain free year!! and I'm still around if you want to talk. ellacjn@hotmail.com

Thanks, Ella, for your diary and for continuing to post! I want to add to the encouragement. I had an MVD almost 4 years ago and have been pain and medication free since. I have had a couple of minor twinges in the general area of my TN that scared me, but were not strong and not even clearly in the same spot. And that area of my face is sensitive to breezes occasionally (I had two other procedures before the MVD). But that is all. It is encouraging to hear from Ella that even if I should get an occasional lightning bolt, that doesn't mean I will be right back where I was. In fact, before the MVD even when I had to go back on Tegritol, the pain was never as severe as in the begining (bad, but not quite as strong).

Thanks, Ella! And may you all find the help you need.

Hi all,
I was contacted twice this week about this diary and realized I have not updated anything recently and I missed my 2014 MVD anniversary! That's actually a good thing. It means I am able to forget about my TN a bit.

Just want to assure you, I am still around, still pain and med free, still hanging in. I spend more time on Facebook these days then any of the forums, but I am prepared to write anywhere that people read about TN. As a matter of fact I was interviewed for a story about TN that will be published next week. I will post the link to the story when it comes out.

Hang in there everyone. Wishing you all a pain free life!