Ron,
Thanks for putting the bargraph out there. It's good to have a visual to show folks. I truly appreciate this.
I have always been a visual person. I have ATN and while it is awful pain to lose a finger I am sure when it happens..it does go away. The thing with ATN is without the right med it takes awhile. So it is soooo important to get this info out there!!! Thank you!! Min
We hired out of pocket a premiere plan where the internist guides you with unlimited time to get the medical help you need. I cant do this myself anymore and thank god the money was there. Im so tired of searching for help and then not finding it.
elaine48, I am new here and learning the unique ways this web site works. I recommended three doctors who have treated me (my MVD neurosurgeon who also recently did my brain stem stimulation surgery, my nerve block neurologist at Cedars Sinai Pain Center and my second pain management doctor). I clicked on all the tabs but can't find the recommended physicians site but did jump to it at http://rarediseases.bensfriends.org/forum/topics/patient-recommended-doctors after clicking through all the tabs on the home page. With your long history then you are probably a TNA member too and if you go to the TNA Connect home page and click on Find Help then select doctors, hospitals, pain clinics, neurologists, neurosurgeons, dentists, etc. then you will have a very long list of patient recommended physicians in many states to choose from. The new list on this web site should grow very quickly as we members make recommendations. TNA Home Page is at www.fpa-support.ning.com then click on the TNA Home page tab at the top of this page because they don't list doctors on the FPA web site. FPA is the new name for TNA and they have their web site resources split between the two web sites until they get everything migrated to the new FPA web site. This is probably old news to you but the recommended doctors list grows every month and there are some good surprises on TN support groups arranging doctor presentations at their monthly meetings too (the support group link is listed on the same page as the recommended doctors link). Consider this a reminder - or say "I knew that and tap your forehead with the palm of your hand like you are a Pollack." You aren't allowed to call us newbies stupid until we make ten or more repeats of obvious statements. If you don't find the TNA list of recommended doctors then post again if you want help searching your state, county or city for patient recommended doctors. One of the neat discussions on this web site is the news that several people are finding pain management clinics and courses that are helping them a lot.
I can absolutely relate.
I work with my parents, and I must say they are some of my biggest supporters. Even at 27 years old my mom still cries for me when I'm in terrible pain. But because I am always in pain I learn to smile through it, when its mild. When its terrible & unbearable, & I make a comment about being in pain, I sometimes feel like they think I say it for attention because maybe 5 minutes ago I appeared fine, & didn't say anything.
Today especially, I had a rough day with my pain. I'm thankful for that today though because it drove me to find something I could channel my frustration through...bringing me to this page.
I've encountered situations where people do NOT understand at all. My last job never wanted to give me time off to go to my doctor appointments or when I'd return they'd ask sarcastically "are you fixed yet or what?" if only it were that simple. Or they'd say "yea my back hurts bad today too but i'm still working". I try to never downplay other people's pain because I feel mine is more important than their's, or worse. I just know what I'M feeling and how terrible it is...I have a hard time fathoming (to myself)that anyone else around me has ever felt pain like this...consistantly anyway, where it seriously effects my quality of life.
I hate it hate it hate it when people say I feel hurt too but I'M still here. They have NO idea what we deal with. They can't know. It's nothing they have ever experienced. My husband has said this to me at times so that is why I don't like this. He gets it now. But he didn't at first. So it was a struggle at first. But I do get what you are saying when others are in pain I have sympathy because Pain is pain. Ours is just debilitating. :(
Exactly, Min.
People think they "know" pain. But this is a different kind of pain, altogether, than any pain I've ever experienced.
I've had natural childbirth and injuries. I've had infections, etc. But, this . . . .this is different.
When a back pain patient says, "yeah, I know what you mean, I hurt all the time too", I can't help but get a little bent out of shape, although I don't say anything, because, NO, THEY HAVE NO IDEA! I also have back pain and arthritis in my feet. None of that compares Trigeminal Neuralgia Type II, or ATN. Nothing.
What kills me . . .the worst pain possibly known to medical science, and what are they doing? Not much. From what I hear, not much at all. I've been told by doctors it's because we're rare.
At least, people can come here and vent. . . .at least that.
Pain medications take it away for a little while for me, at least that too.
I hope something helps you too, sometimes, dear friend.
All the best.
Min C said:
I hate it hate it hate it when people say I feel hurt too but I'M still here. They have NO idea what we deal with. They can't know. It's nothing they have ever experienced. My husband has said this to me at times so that is why I don't like this. He gets it now. But he didn't at first. So it was a struggle at first. But I do get what you are saying when others are in pain I have sympathy because Pain is pain. Ours is just debilitating. :(
See, Amanda, that's what gets me. I don't think back pain patients can even begin to understand what we go through. I've had back pain, and known many people with back pain. It's easier for them to block the pain out a little, and focus on something else.
Your face is something that is more central to your being. I don't know why it's worse, but it is.
I've had bouts with big, bad TN Type II that were worse than natural childbirth, and I would know. My 2nd child was born au naturale at a midwives house!
I'm glad you have a supportive family. My mother just tells me to stop talking about it, that it depresses her to have a daughter who has something THIS BAD, and asks me if I've ever stopped to think about how SHE "feels about it". Uh . . . .yeah, my Mom has never been a source of comfort. I'm glad yours is so compassionate.
All the best to you. You sound like such a nice young lady. I'm so sorry that this has happened to you so young. Heck, I'm young too, and I'm like 12 years older than you. I feel cheated, cheated out of what is supposed to be the best time of my life.
Oh, I hope some miracle happens in some research center somewhere, and soon. I do still believe in miracles. Never stop believing in miracles.
AmandaMontana said:
I can absolutely relate.
I work with my parents, and I must say they are some of my biggest supporters. Even at 27 years old my mom still cries for me when I'm in terrible pain. But because I am always in pain I learn to smile through it, when its mild. When its terrible & unbearable, & I make a comment about being in pain, I sometimes feel like they think I say it for attention because maybe 5 minutes ago I appeared fine, & didn't say anything.
Today especially, I had a rough day with my pain. I'm thankful for that today though because it drove me to find something I could channel my frustration through...bringing me to this page.
I've encountered situations where people do NOT understand at all. My last job never wanted to give me time off to go to my doctor appointments or when I'd return they'd ask sarcastically "are you fixed yet or what?" if only it were that simple. Or they'd say "yea my back hurts bad today too but i'm still working". I try to never downplay other people's pain because I feel mine is more important than their's, or worse. I just know what I'M feeling and how terrible it is...I have a hard time fathoming (to myself)that anyone else around me has ever felt pain like this...consistantly anyway, where it seriously effects my quality of life.
I wonder if Rhizotomy would make me "Comfortably Numb". So, that song has been in my head, here and there. I'm toying with the idea of just having the nerve cut, all except for the parts that deal with being able to chew.
Fun to watch . . .haven't heard this in awhile. Thanks, Bill.
SF Bill said:
I checked out "Comfortably Numb" on you tube. I post this with trepidation. It's grim. It's disturbing. A somber, dark side of TN. I like Pink Floyd
But you look so well.Tiered of hearing it? Not herd it yet people just seem to look at me funny and just don't get it.
Then it just seems to be forgotten.If I'm seen with my head in my hands I just get.."headache? " I get sick of explaining it.I have a friend with CF.She kinda gets it.But you can't see it,you can't hear it,(ie a cough).And it's not always there.
Guess I can't hold it against people but I really get fed up with it and fancyed a good old moan about it.
I can;t cope with contacts and my glasses make my face ache.It constantly feels like I've been punched in the face.Makes me a bit irritable some days.So I have to be carefull not to bite people head off sometimes.
If I didn't go in cos my face ached,I'd never be there!!!
Had my moan.Feel a bit better.
Dear jacksharkey
Go ahead and "bite their heads off!
Hello Bill,
How are you? I'm still struggling to believe this is TN.But my face still hurts.Huff!!!
I'm a bit over tierd today.It's this new role at work.It starts at 6am.Yawn! For a change my headache is worse than my face ache.LOL.
step... agree 100%. it sometimes frightens me... like living in a nightmare.. in what i live in and how can it now be shown in the outside... so i would expected to do everything like a "Normal" guy.. .but the pain is so severe.. i think other people who would have it - would have fainted from this kinda pain.
and look in the mirror - can not see the pain.
funny thing about pain - when it's gone (i have maybe a few minutes a day the pain is level 2-3-4) .. . you "forget" how bad it can be till it starrs again.
I can totally relate to this topic. I don't say much to people when they ask me how I am. I usually reply with, there's been no change since the last time I saw you, but thanks for asking. Recently, in an email a friend asked me if I was going to attend an upcoming event and she asked me how my headache situation is. Headache situation. Can you believe it. I replied with...
Hugs back at you and I would like to see you too.
My condition has not improved, but thanks for asking. Because I don’t look ill on the outside and I don’t have a visible injury, many people don’t understand what I’m dealing with. It’s not just a constant headache I suffer with. It’s a neurological disorder where I also have intense pain my teeth, ears, sinuses, cheeks, forehead, upper and lower jaws, pins and needles sensations in my eyes, hot/sharp pain in my scalp. These symptoms are very random, intense at times and tend to worsen in a cool breeze, being in loud and noisy places or while talking, chewing, and even smiling can cause pain. I have good Doctors looking after me and we are trying different medications to ease the pain. The medications make me drowsy sometimes and I need to rest often through out the day.
I can’t believe that I worked all those months with this. Going on sick leave was a difficult decision but I couldn’t go on the way I was. The pain can be very unpredictable. I felt I was doing a disservice to the people I worked with. I was unreliable and I had to leave work sometimes or had to stay home regularly. I miss the students, families and staff from school. We’ll see what the future holds. I keep hoping for remission.
I didn’t mean to go on and on but it’s not just a “headache situation”. Thank you for listening.
In addition I will not be attending the Clerical Wind-up because of noise factor, it would be very uncomfortable for me.
Take care.
I hope I didn't come across to strong, but on my goodness. How do you make people understand?
hi,
spent a week im the hospital, was dehydrated and must change pain meds. all of a sudden, the nature of the p ain changed. I was petrifified of being in air so long, so they made allowances for extra moisturizer. my gums were bleeding, lack of saliva. gross. I have the head of the unit working on my wierd case. Im on om the patch at 50, 2 5 mg. oxycodone, new antidepressants, neurontin, and a host of new meds as they plot the next step. Ativan 1mg replaced valium. Hugh discrepincies on pressure due to the cold and some dysphasia. I did this because i really had to prove my case. Social services will begin. Hubbie is fully supportive. I feel awful. i know i have linguil, glosso, occipital, nerve root, and too little tisssue. since i am short by ears ans eyes, I am dizzy. So whats next. i liked sleeping more better. clarity is not fun in this situation,could it be worse?????
exactly! i do have alot of support and can go 4 weeks(made a 6 week) with out narcotic .......just must stay homebound, not talk and not chew or have any stimulation to face. sometimes, that is the key but then again sometimes the pain comes on its own despite my doing everything i can to prevent it. you have good summary above like you added w/ stage 4 etc. i think alot of m.d.'s know and understand this. perhaps they don't want to say it to their patients...i don't know, but i live a quality of life now. made comfortable when narcotic needed but if real bad "supernatural" attack, it does not take the pain away however it may be quieting it and i don't realize it at the time.
Hi Stef,
Yes, I can totally relate to that. I guess it's good we don't 'look' exactly how we feel because we would be looking pretty scary on our really bad days. I have had to hand reading materials to friends and family so they really understand how isolating it is. Even if I'm in the room I might be in so much pain that I am quiet and withdrawn. I certainly don't want to be, but we can't help it. I've even had doctors tell me that if they saw me just sitting they would think I was a normal healthy pretty girl. Why does a Dr need to tell me that. We need empathy not more of the same. I pray and feel for all of us to one day be pain freee and able to live normal lives. God Bless.
I hear this all the time.So now when I go to the doctors,they know im in pain.I think all the other times,they thought I was nuts....2weeks ago,I collapsed in my kitchen,thank god my husband caught me,called the ambulance it looked like I had a stroke,plus my left eye pupil wasnt dilating.Had a CT scan showed I had an AVM on my left side of brain where my TN is.I was in the icu for 3days,now im put on medication for seizures.The nurse that came in to see me told me i dont looks sick at all,until the doctors came in,she shut her face.Now,im very high risk of stroke,bleeding in my brain,even death.So for now on im living life,and I dont care anymore.Praying for the best for youBarb
SPEAKING OF ......JUST CAME OUT OF ANOTHER SUPERNATURAL ATTACK. WINDING ITS WAY DOWN NOW. FULMINATING BY 7AM THIS MONDAY AM. FELT IT COMING SUNDAY EVE.....TOO MUCH TALKING YET I HARDLY TALK.ONLY THING IS THOSE I LET IN MY HOME, VERY FEW AS I AM BETTER ALONE, WHISPER OMG YOUR FACE ON RIGHT IS SOOOO SWOLLEN. MY TEETH ARE VIBRATING, EYE STABBED AND FEELING LIKE SLEDGE HAMMER JUST BRUISED MY RIGHT FACE. THIS IS THE "EASY PAIN" THAT IS ON ITS WAY DOWN. ALL DAY COULD NOT MOVE, MOVE HEAD HALF INCH AND VOMIT. TRULY, WHAT DR WOULD NOT LOOK AT THIS STUFF AS STAGE 4 CANCER PATIENT PAIN. WELL, I HAVE THE DILAUDID FOR PAIN AND IT HARDLY HELPED IN FULMINATING ATTACK EARLIER UNLESS MY PAIN WAS SOOOO SEVERE I COULD NOT TELL. CAN ALL BUT SEE NOW. THIS IS UNBELIEVABLE. INVISIBLE ILLNESS/INVISIBLE PAIN. MY DR KNOWS FROM CAT AND JUST SAYS NOTHING B/C HE KNOWS THE PAIN I HAVE. OMG .....COMING OUT OF SHOCK NOW.
Sometimes I get a tic in my lip.
"SEE!!!! I am NOT fabricating this pain."
LOL.
This makes me totally crazy.
It reminds me of not going to grammar school in fifth grade and having siblings saying "You're not really sick. You are faking it!"
I wonder if underscoring that we are in fact SICK might be of help. Not just in pain but sick.
I explain that the pain came from a botched root canal and most people make comments like "Why don't you go to the dentist?"
They don't listen.
"No. The nerve is damaged. It is severe nerve pain".
I spent YEARS running from dentist to dentist to oral surgeons to a doctor/dentist as my PCP gave me no guidance whatsoever.
Due to his negligence by the time I did get to a neurologist, who confirmed my "suspicions", it was too late to sue the oral surgeon who destroyed my life.
That was the problem- the dentists. Four dentists botched me up- all big time.
I can finally tell people that definitively, based on what I have learned here that there is NO cure for ATN, that all I can do is see that my symptoms are treated. My neurologist and I have always been on the same page with this. We both do our homework and he wants me to be as educated as I can be.
I loathe being treated as if I were some criminal. The pain meds do not make me feel high. They NEVER have.
But many of the other meds we have to try have made me appear higher than a kite.
Before I figured out it was Neurontin I attributed getting so dizzy that I had to crawl to the bathroom to a tranquilizer.
But, no, it was an anti-seizure medication that made me dizzy.
This pain started 18 years ago and my brother still does not believe me.
I complain about getting ice picks repeatedly stuck into my face and he grunts, groans and grimaces.
Three other relatives in the car and no one expresses any sympathy whatsoever. I get ignored.
I recently had a pharmacist go ballistic on me. Hardly the first time but she was particularly ignorant.
All I did was submit, at different times, two scripts. As soon as they get a "hot" one (ie controlled substance- pain med), they look for errors.
"You gave me two invalid scripts!"
"They are NOT invalid, call my dr."
If you think I have broken a law- then have me arrested. But I have not broken any laws. So instead I get antagonism, belligerence, hassles.
She has to fill these scripts... so what is the point of making me run back and forth on the bus?
It makes me crazy. How people can be so cruel.
I was lucky. My dentist was actually the first person who clued me in that no it wasn't a dental issue or my imagination, it was a neurological one and I needed to see a neurologist for something called trigeminal neuralgia. He doesn't even blink about getting me valium before I get my teeth clean because he knows that just that can be a trigger and he does a full update on my meds and recent procedures before he starts anything. I don't know why this started, but I am grateful that there is one dentist that does his homework and I found him.