Two hundred plus people who have likely never met travel across the country (or around the world) to gather together and share intimate details of their lives like they are long lost family.
This is what happens when The Trigeminal Neuralgia Association offers their national conferences.
Something about meeting others who have actually felt the indescribable jolts of trigeminal neuralgia and other face pain syndromes is unique. Knowing others have experienced this and are surviving is validating and encouraging. Hearing their stories seems to validate my own. It may be the only place where our stories of incredible pain are really understood.
We are able to find out what kind of treatments have helped others. Some have found relief from the monster and sadly others have found no way out of this nightmare.
Medical experts from around the world share the latest in science regarding the causes and treatments of this disease.
Often people who find relief from their pain walk away from this group and never turn back. Getting on with their lives without TN. Thus people who are still in pain don’t get to see many in real life who once had TN and no longer do. One important reason I go is to be a face of hope. The other reason is because I can never forget. I can never take for granted a pain free day.
We just returned from attending the 9th annual national conference of the Trigeminal Neuralgia Association.
This years conference was held in sunny San Diego, Ca.
I cannot describe to you the benefit we get from gathering with others who have known Trigeminal Neuralgia and other face pain syndromes. This horrific pain is described as the worst pain known to mankind.
Because it is not well known; resources for coping and medical care are often difficult to come by. Yet the Trigeminal Neualgia Association brings together experts in the field from across the world. Three days of learning that we are not alone, that there are surgical and medical treatments that can sometimes stop the pain and at least lesson it’s severity.
We network with others who are still struggling with TN and other face pain. Seriously I have made friends for life by attending the last 3 National conferences. My husband has had the rare opportunity to connect with other support persons who know this pain by association.
All of us are validated in our fears. We are encouraged by seeing others continue trying to lead productive lives. And we come away with greater understanding of our disease and ways of coping.
I am a fortunate one who found relief in brain surgery (microvascular decompression) to stop my pain in 2006. Not everyone who has TN is a candidate for this surgery. Others find pain relief for some time and then the monster returns. My most recent post about my experience with TN is here:
title="It began as an itch in my ear" target="_blank">
Many of the Neuro Surgeon’s at the conference mentioned recurrent pain years after MVD. For a multitude of reasons that I will describe later. Yet meeting people who have been pain free for 12 + 16 years encouraged my hope.
And during this conference I became aware of a co group of the TNA which is working to actually find a CURE for TN. This foundation is likely the most exciting thing I was made aware of. Please check out The Facial Pain Research Foundation
Time to share a synopsis of my story with what is the worst pain known to mankind. I was just over 40 years old and was enjoying my personal pursuit of fitness after giving up decades of cigarette smoking. It should have been the best part of my life.
However I was experiencing an itch in my ear. I would describe it as a daddy long legs driving me insane in my left ear canal. I used my pinky finger nail to try to scratch it. But nothing stopped the sensation. It would go on for a couple of months and then stop all together. Months later it would return much worse. The itch evolved into a very serious pain. I began seeing a friend who is a nurse practitioner. She treated me for swimmers ear and other possible conditions. Often I would think we’d solved it but it always returned with a vengeance.
Finally I called her saying “I can no longer cope with the pains that are jolting my ear.” The pain began feeling like being electric prodded and was beyond my description. When I wasn’t dealing with the actual pain I was emotionally shook up trying to recover yet knowing the indescribable would surely happen again.
Now my friend referred me to a specialist. She told me that although she was initially sending me to an Ear Nose and Throat Dr. I would most likely end up in a Neurologist’s office. Then she said the words I’d never heard nor could I pronounce or spell “Trigeminal Neuralgia”. She told me that the good news was it was treatable with medication.
The ENT Dr. did confirm the TN and sent me to a Neurologist so I could be prescribed the anti seizure medications that would stop my pain. The Neurologist ordered an MRI to rule out a brain tumor or ms. Sadly the MRI did show lesions from MS (another surprise/ another story). My TN was not related to MS as is sometimes the case. The anti seizure medications helped the intensity of my pain at the same time they gradually numbed my life. The worse my episode of pain, the higher my dose of medication would be to cope. Eventually I was taking so much medication that I felt my life was not worth living. And even at the highest dose my pain was not gone.
After 5 years of living with these episodes of pain I went to Vanderbilt and had brain surgery called microvascular decompression. I consider myself one of the lucky ones because the surgeon saw clearly the artery that was compressing my trigeminal nerve as it exited the brain stem. He lifted the offending artery off and placed padding around the nerve.
This was the scariest thing I have ever done in my life. But in my situation it was the best decision. I have been free of TN pain since 2006. However I still consider myself a person with TN. I just cannot take for granted that I have pain free days. Not everyone is a candidate for brain surgery to stop their TN pain. Others only have relief for a time and then the pain strikes again.
I want people to be aware of this condition that leads some to suicide. Next week will be the 3rd national convention we’ve been able to attend. I look forward to reconnecting with people who we’ve met previously. My hope is to encourage someone who suffers. I will be updated on the latest information about and treatments for TN.
I still deal with symptoms of my slowly progressing multiple sclerosis daily. But I do not deal with the pain from trigeminal neuralgia.
My heart in sharing with others has always been the intent of encouraging them. Waiting for happy/healthy post ideas is causing me not to blog at all.
This is for those of you who deal with chronic health issues.
Sometimes it may well be the simple things causing present problems.
Several weeks ago I began feeling sudden jolts of severe pain in my left ear. These horrible sensations were not new to me. Yet the fact that I was feeling this at all was frightening. You see in 2006 I had brain surgery to stop the jolts of pain called Trigeminal Neuralgia I began to question my Neuro Surgeons assurance that it would never come back. I went to see a friend who is also a Nurse Practitioner to see if I could have a simple ear infection. (Due to the flu epidemic I did not want to sit in my family Dr’s waiting room for him to look) She said that I did have fluid behind my ear drum. She recommended I take a second-generation antihistamine daily to see if this dried up the fluid thus stopping my pain. Over the next month the jolts of pain became less and less. I’m not feeling them at all now.
Soon after I came down with a case of shingles. I called my Neurologist (again not my Family Dr. b/c I knew his waiting room surely has become a petri dish of flu) He prescribed anti viral medication and because of my recent concerns with the TN pain and fatigue etc., he recommended a round of oral steroids. In his words “to nip it in the bud” I almost always refuse the steroids. Yet this time I was tired of feeling tired and in pain etc. So I took them. *another post about the fact that I have MS later*
My shingles had initially seemed to respond to the anti-viral meds becoming less inflamed. But as soon as the steroid/ anti viral prescriptions were finished the shingles did re-inflame. They also began to look infected. So now I was afraid. I called my family Dr. and after I told his office girl my fear of sitting in his waiting room she suggested that I come in as 1st patient and wait for him in one of the freshly cleaned exam rooms. (should have done this right off the bat)
He said #yes this looked like a case of shingles #2 the infection in them looked like something he had seen before on an immune compromised patient. He suggested that steroids are not good to take with shingles because they suppress your immune system. So he is treating me with more anti-viral drugs and antibiotics.
As time has gone on during these recent health issues I’ve become more and more fatigued and dizzy. Of course I blamed this on having the shingles, being on so many drugs and my MS.
Yet today it hit me: Could the drug I began a month ago for the fluid behind my ear causing me this extreme fatigue and dizziness? I texted with the Nurse Practitioner and she said that Zyrtec could cause tiredness but usually doesn’t. Guess I’ll try another.
And it turned out for me that trigeminal neuralgia was not caused by my multiple sclerosis; they were actually two separate neurological conditions going on.
My multiple sclerosis has set a really slow tempo of progression no doubt this is great news. The symptoms I deal with are primarily invisible to those who deal with me on a casual basis. I don’t walk with a limp or outward disability. On good days *the times you’d see me out and about* I look pretty good
Yet, if people only knew my invisible struggles. Fatigue that makes me feel like I’ve been run over by a truck. Heat intolerance to the point that I can not see straight to drive after being over heated by the temperature outside or a hot bath or a fever. Migraines that can ruin two or three days in a row. Sleepless nights which lead to a bad attitude and non accomplished days. Chronic urinary tract infections caused by a neurogenic bladder that will not completely empty on it’s own and then requires intermittent self catheterilzation. Cognition issues that make it difficult for me to comprehend directions given or a book I’m trying to read if there is any competing stimuli going on around me. Dealing with these things almost constantly brings me into battling depression.
My plan today was to write a blog post about my invisible chronic illness and to top it off I saw our picture included in Montel Williams slideshow titled: I am the Face of MS
Warning Graphic Slideshow of MVD (Micro-Vascular Decompression Surgery) which I underwent in 2006 to stop the monster known as TN (trigeminal neuralgia)
I saw this sideshow tonight on a online TN support and realized that I just can’t forget the significance of what I endured as far as the pain from the “Monster *TN*” and the gravity of the 5 1/2 hr brain surgery I went through to stop the pain.
There are plenty of people who suffer with this terrible pain today. My heart, my prayers go out to them and their families. Some are afraid to endure major brain surgery, others have had this procedure or others and have either not had success or did for a time and then the monster returned. Still others have found other ways to try and keep their TN at bay
Trigeminal Neuralgia is rare. But this diagnosis is associated with suicide more than any other diagnosis. Just want you to stop and say a prayer. Thank-you
After hearing about the devastating flooding in Australia, I emailed Bozica. Thought you might be interested in her reply:
” Hi Martha,
How are you guys? I hope this email finds you both healthy and happy.
I haven’t forgotten you two either.
Firstly I would like to say, I hope you had a Merry Christmas and also would like to wish you both a very HAPPY NEW YEAR.
Yes the floods are devastating, it’s the worst I have ever seen. We just can’t believe this is actually happening.
The lives that are lost, the properties, the livestock, it’s absolutely unbelievable.
My family and I are all well, (so far). The floods are up in the North, we live down in the South. Although they have issued
flood warnings to us for the next 3 days or so. The rain has been incredible. We get a bit of sun and within minutes the down pour
is so heavy and fast it just floods the roads, the driveways, but obviously nowhere near as bad as Queensland.
The rains are now moving downwards to another state called New South Wales. This is quite a large state and still a long
way away from us but you worry about the damage it may cause. However they are saying on the television that the rain
will keep moving around more states and areas. Exactly where it goes and stops? Well, nobody knows this.
We’ve been living in a drought for the past 10 to 15 years and now this. There is such a shortage of food up there, I spoke to
one of my girlfriends who lives in Queensland but isn’t affected as yet. She says the supermarket shelves are very empty.
I would hate to the price of food once all this is over. They’re already saying the prices of our meats will rise by about $3 to $4 a kilo.
My pain hasn’t been too bad lately, thank you. I am due for another infusion and will be having this on Friday.
Thank you for your concern, I really appreciate it.
It’s so good to hear from you again and it’s lovely to keep in touch.
Imagine suddenly experiencing a painful jolt that is shockingly intolerable and indescribable at the same time. A zap that is so intense and unexpected that it can throw you to your knees even before you knew what had hit you.
The immediate after effects of post traumatic stress and the anxiety of considering another zap of this pain is beyond coping with.
Then you learn this horrible pain has a name: Trigeminal Neuralgia; also known as tic douloureaux. Trigeminal Neuralgia is considered the worst pain known to mankind. I heard a Neurosurgeon describe it as The Mother of all pinched nerves.
A neurological condition caused by a branch of the largest of your cranial nerves being pinched. The only hope of dulling the intensity of the pain is taking large doses of anti seizure medications that are known for their numbing and often disabling side effects.
This rare condition affects only 1 in 15,000 people. The paralyzing pain is most commonly felt in the face or jaw.
When you are suddenly dealt this blow, Then the shock of knowing you will continue to endure episodes of this pain is as emotionally traumatic as dealing with the pain itself. There is nothing more isolating than living with a condition invisible to others, which changes everything about your life. There is hope in knowledge and support in the company of others who have experienced this monster and understand.
This is where the Trigeminal Neuralgia Association comes in by drawing together the Physicians who treat this condition and the people who suffer. TNA has a great website full of articles, research and stories of others who have survived TN. They offer a discussion board so that patients can support one another. Also offering conferences both regional and national to bring together the patients and the Physicians who present advancements in treatment.
Gathering together with others who have experienced this pain and those who understand is a family reunion of sorts.
I can’t imagine anywhere else where hundreds of people are so focused on a presentation while at the same time many are holding scarves to their faces, grimacing, others holding suckers of potent opioid medication between their lips.
These people have been forced by pain to come to the understanding of medical procedures and treatments that most have never heard of. Where else can you go into a room with hundreds of people who are sharing their stories of microvascular decompression surgery, percutaneous stereotactic rhizotomy, glycerol rhizotomy, balloon compression; and actually understand what these things mean. All with the common interest in a condition that affects so very few.
Yet Tommy and I were enormously grateful to have been given the opportunity to come and experience our 2nd National Convention of the Trigeminal Neuralgia Association.
Our conference was offered at the prestigious Mayo Clinic at Rochester, MN. There was comfort in gathering with others who know first hand about this horror. We felt immediately like family when meeting others who have or still are experiencing this indescribable sensation.
We also felt it almost a mission to attend the conference with a success story. I had brain surgery (MVD) for my trigeminal neuralgia in 2006 and have not had the pain return. ((My Story here)) And without the TNA I may have not known this surgical technique was even something to consider. The sad fact is that once people do get relief for their pain they tend to move on with their lives and no longer show up at TNA events. Then those who are suffering and hearing about the treatment options available only look around seeing primarily those who have experienced failure of treatment and are still in pain.
We learned so much and met so many wonderful people. I hope you will take time to check out the TNA’s Website and become a little more aware of the fact that there are people who suffer the unimaginable and survive.
The above blog post is dedicated to David Simmons who is the 1st TN sufferer to give me hope. He introduced me to the Dr. who ultimately stopped my pain. Today (publishing day for this post) is David’s 7th year anniversary being pain free after his MVD! Thank you David.. Thank you Dr Peter Konrad.