TN Is "The Most Painful Condition?" I Call BS

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I've been doing some thinking about some claims we see tossed around here as though they were facts that I think should be open for discussion.

TN is the most painful condition known to man.

I've seen the same literature as everyone else here. The original was more like "Trigeminal neuralgia has been described as one of the most painful conditions known to man." One of, and that is important.

We aren't special, we're just one of. That statement doesn't even allow us the worst pain known to man, just a really painful condtion. I'm not even sure that's true anymore. That statement was made back when the only TN was classic TN and excludes what we now call TN2. Until a few years ago, TN2 sufferers had an entirely different set of disorders, so they weren't even counted in that description.

A few years ago one of our neighbors died of pancreatic cancer. At the end his pain was intractable, nothing would stop it. i'm relatively certain that what he felt was far worse than anything we've ever felt, and it was a blessing to his wife when he died. Watching him suffer added ten years to her face.

A few years before that my husband's cousin and I had lunch because she had just gotten diagnosed with TN. We had a nice chat and I encouraged her to get an MRI to rule out the unusual. When she did, they found cancer that had spread from her liver to her spine and up into her brain. TN quickly became the least of her pains and her children are without a mother. They would've preferred a mom with brain fog to the one in the grave.

Back when treatments like medication and MVD didn't exist, the claim was solid. Today, I'm not so sure. If we were really all still suffering so horribly this support group would be filled with people bitching about how they can't feel their faces because we would've all gone out and had the nerve destroyed already. Or we'd have killed ourselves and this site wouldn't exist.

The reality is that every single one of us has options today that make TN painful, but not incapacitating.

TN is a rare disease that only affects old people. I'm young, so that makes me very rare.

Once again, this used to be true but isn't anymore.

TN was a rare disease back when the term meant something very specific. Most people who got it were over 60, and what they got was TN1. Again, TN2 didn't exist, you couldn't get it, young or old. You probably had Atypical Facial Pain, and it was a psychiatric disorder, not neurological. Of course, this meant that you were crazy or faking it as far as medical doctors could tell.

For all you young people out there, your problems come from the fact that you didn't exist or were an oddity until just a few years ago. Your doctor doesn't understand because they were already out of med school when the new classification was proposed in 2005. That's also the reason they keep trying to send you to a shrink.

Today, because the term Trigeminal Neuralgia means pretty much any chronic pain of the trigeminal nerve with a few additional qualifiers (TN1, TN2, symptomatic TN, etc.) it is a relatively more common neurological disorder. We're talking one person in 10-15,000. Be grateful if you're one of the ones who are lucky enough to live in a developed country with access to medical care.

I'm going to be disabled, my life is over, etc.

Only if you want to be disabled, or if your life being over appeals to you. It's your choice and there are no excuses or "special considerations."

If you don't like the side effects of your meds, get in line with the rest of us. You aren't special and you aren't more delicate. If you have a rare allergy or serious side effect (like your skin starts falling off), get on a different medication. With the wide variety of medications available you are realistically not going to be allergic to all of them.

If you seriously hate the meds or have a clear compression, get surgery. It has risks, but so do all surgeries. Nothing in life is risk free.

If things are completely intolerable, have the nerve destroyed. Your face will be totally numb for the rest of your life, but everything is a trade-off when it comes to severe pain.

If you are still foolish enough to believe that your life is over, recognize that you are just going through the same stages of grief that we all went through. It will get better with time and you'll realize how stupid it was for you to believe this nonsense just a little ways down the road.

Very few careers need to be ended because of this. If you are a medical professional, attorney, truck driver, or child care provider one of them may be yours. Everyone else may be able to develop enough assistive aids to get by. Think I don't understand? You're wrong. I work in foreclosures and have to drive around all day and stay on my toes enough to outrun dogs and face potentially deadly situations every single day all day long while taking meds that make me dizzy and sleepy. You think dealing with answering phones is tough? Try an angry homeowner with a gun or pit bull, or a vacant house with multiple safety hazards/booby traps and get back to me. And this is the career I switched to after my TN started.

This is a support group, I come here for hugs and kisses, not to have my ass kicked.

What you are hoping for is about as useful as going to an AA meeting so you can sit around talking about how great it is to be drunk. It's just pissing in the wind and not the least bit useful.

Nobody should ever support someone feeling sorry for themselves or give you tips on how to be a better loser. If you want that, you're looking to hurt yourself.

When I first got here, I wrote about whether or not I belong here. I'm still not sure, because I haven't figured out if this is a real support group or just a bunch of people who want to cry about how nobody understands. Umm... we should all understand... and understand why it's important not to let our sympathy get toxic to us and all the new sufferers out there.

The stages of grief apply here as much as anywhere, but we can't lose sight of our responsibilty to move through them and encourage others to do the same.

1 Like
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A great perspective of TN. Yes you do belong, I for one is certainly glad to have you aboard

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Hi Tina,
I appreciate the theme of your blog and believe me I understand what you’re saying, I must remind you that life is not always so black and white, be careful of generalizations as well…

This IS a support group and there are MANY of us who put a lot of time and effort into providing support. We try very hard not to support the “toxicity” or enable .

My uncle died of pancreatic cancer within 6 weeks of diagnosis, his pain was incredible for 48 hrs. He was kept comfortable on morphine and a cocktail of other meds for weeks until his passing.

I have not had relief from my 6-10/10 of pain in 4 mths.

Granted I will not die of my TN , but really comparing my journey/ pain with TN to someone dying of cancer isn’t realistic or respectful to those who have died or to me who suffers incredible levels of pain with no relief each day despite my best efforts .

Until that becomes your reality you can’t just assume I can change my meds, get surgery, or decide not to be disabled, not work etc etc.

I don’t spend 24/7 thinking woe is me, I DO try new meds, to no avail, I AM signed up for mvd with no guarantees and I am completely unable to work NOT by choice. I CAN’T drive due to vertigo and I CANT work due to the high dose meds I am on. I want to work, but I am NOT allowed too. I have worked since the age of 9. I look forward to when I can work again.
I will not sever a nerve and risk the constant horrid pain of anesthesia dolorosa, or the loss of control of a side of my face. It’s not that simple. I’m young.

No disrespect, but many of these choices have been made for me, the only choice I have is to choose how I react.
Each day is different, some days I am strong and positive and other days, the lack of control I feel over my current situation feels very overwhelming. There are stages of grief, and sometimes you think you’ve gone through them, mastered them, only to revisit a stage or two again.

In any event, I appreciate your blog and glad you wrote it! You make some very valid points.
This REAL support group will have many different people , including those who will never understand what you wrote or comprehend the spirit in which you wrote it.
You are a welcome part of this group as much as they. : )

Luckily, we each can choose what we read and whom we respond too, being empathetic is different than being sympathetic and vice versa.
It Is the diversity of this group as in real life that makes the world go round. We can learn from one another and share our journeys and respect one another. We can’t lose sight of that responsibility.
I’m glad that there are many of us who think like you in regards to encouraging others to move through the stages of grief, and not be mired down by definitions or preconceived notions of TN.

We need all the help we can get to encourage and show people we can get through this and that most of us can live a normal life, so I HOPE YOU CHOOSE to STAY!
If you’re not receiving the support you need please message any one of the moderators and let us know what you need. Start some discussions in our forum to bring about the feel of support group you’d like to see. I think you can offer this group a lot, in turn I also feel you might get what you need in the process.
Huge (((( hugs )))), Mimi xx

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Sorry Tina but I disagree with some of what you have said.

I didnt join this site to get a slap in the face wake up. I came here to find others who understand what TN is and does to a person.

I dont think you have experienced exactly how bad TN untreated and mistreated by doctors can be. The MVDs and Meds you speak of dont always happen immediately. I am a former combat veteran and thought I was unbreakable. TN broke me down all the way to crying like a baby after 5 years of misdiagnosed pain. After about hour 7 or 8 of a pain episode I would finally break down into complete exhaustion and wish I could rip every thing out of my head. I have suffered pain of such intensity that I have almost destroyed the headboard of my bed while calling out to long ago gone relatives. I could give many other examples but not the point of my comments.

Lots of people suffer everyday and I would never try to claim I have had more pain than they have. This is something you just dont need to do. TN has taught me to be more sympathetic to the pain of others. I dont think anyone here wants to suffer anymore than they already have.

Your comments here remind me of the people who fuss about the handicapped parking and why should they get special treatment.

Sorry Tina but you can encourage people with TN to get on with their lives without kicking them in the rear.

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Thank you Mimi.

I guess the real point I'm trying to make is that if we (since I'm here for the time being) want to support people, we need to be realistic about ourselves. Using you and your uncle as an example that might be understandable, which one of you has more choices about how to live your life right now... at this very moment? I know if I was given the choice to trade diseases with your uncle, I'd gladly keep my TN.

The problem I'm seeing isn't with your attitude with yourself, I have concerns about how we "support" the new sufferers. While they are getting hugs for joining the pity party nobody is telling them the harsh reality of all of this. They need to develop good coping skills from the get-go or they will increase their risk of being as disabled and uncomfortable as you are right now. There is a fair chance their symptoms will become worse with each passing year.

I used to go to AA meetings with someone I cared about on a regular basis. We went to two different meetings each week. One was an evening meeting full of old men with some serious sobriety under their belts. They were a constructive bunch of old farts who would speak the truth and offer practical suggestions for the newly sober, but sympathy was seriously not their thing.

The other group was more diverse and had a lot of recent rehab patients. They were deeply sympathetic and accepting of everything. You got drunk and smacked your wife around? Well it was probably her fault for being such an enabler, that kind of thing. That group did nothing but hurt my companion, and every time we left he had a crappier attitude than when he walked in the door. I eventually had to talk him out of going because that group was setting him up for failure, even though their intentions were just as good as the other one.

At the end of the day getting hugs and kisses for having a bad day will do nothing to teach people how to minimize how bad the next bad day will be. It just sets them up to believe that the world at large should give a damn about this condition over all the other painful conditions and diseases out there.

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Tommy, I'm perfectly fine with you disagreeing with some of what I wrote. It's nice to see other perspectives.

I'm not a combat vet, I'm a run-of-the-mill middle-aged woman, so it's a fair bet that you are tougher than me. That doesn't make your pain any worse or "real" than mine. I've done the screaming until they knocked me out thing too, many times in the last decade. I'll probably be doing it in the near future. Shit happens.

I spent three or four years undiagnosed and it was a living hell. Every time I went to the doctor they would give me percocet, darvocet, vicodin, prednisone, or shots of morphine. My medicine cabinet was a junkie's wet dream, and little did I know that what I had was nerve pain and that opiates tend to make nerve pain worse.

Right before I was diagnosed I became extremely suicidal because I thought there was never going to be an end to it, and I didn't even know what it was. I can remember crying in the bathroom while my husband and (approximately) 12 year old daughter listened to me beg them to let me take the .308 out into the field and shoot myself in the head. Anything, even suicide, seemed reasonable if it would only stop the pain. I was even willing to discuss it with my preteen daughter in the room because I simply didn't care anymore.

The turning point happened for me what I finally got the suggestion that it might be TN just a few weeks later. All of a sudden I could have control again! It wasn't mysterious anymore, there were things I could do, skills I could learn to cope.

I have to admit that another option was very tempting in those early days. I could've stayed a victim and blamed my TN for what could've continued to be a very crappy existence. The first couple of meds I tried either left me unable to walk (literally, I was so bruised from falling that a friend thought I was being abused), or didn't work. It would've been really easy to throw up my hands and declare that my life was over.

Going back to the preteen daughter, you can probably understand why I decided that giving up wasn't an option now that I had options. Fast forward six or seven years to today. I'm still working because college is expensive and she wants to go to med school. I spent all summer taking care of my father-in-law until he died in my arms in October, and now I'm working more because the funeral bill needs to be paid along with tuition. Life is good because I work damned hard to make it that way despite feeling like crap and being exhausted from the meds.

I'm not extraordinary, I'm not lucky, and my TN is not mild or less painful than yours or anyone else's. It's all about the difficult choices we make each day. Every single day I have to decide that I own my life and take responsibility for the way I live it.

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So if I had “developed good coping skills from the get-go” back in 2002 at age 29 with 2 small children when first diagnosed, I wouldn’t be “as disabled or uncomfortable as I am right now” ?

That’s my point Tina, you can’t generalize, I coped quite well in 2002 and managed to work ( only took 4 days off work to get the Tegretol working) brought up 2 daughters, took care of my dying father for a year, volunteered ,etc.etc had an 8 yr remission…

My pain not responding to meds anymore at age 40 has nothing to do with what I did or didn’t do, how I coped or didn’t cope.

It just is.

Respectfully, I disagree, I own my life, and I take full responsibility for it. I too have a daughter in university and have bills to pay, my pain does NOT respond to meds, I Cannot work, you’re very lucky that you can, it may not be easy but you can work, I wish.

In reference to my uncle as well as to your reply to Tommy, I will tell you that I know you know there are days when I would have gladly traded places with him, as you would have as well.
"giving up isn’t an option for me " either…

You and I are veering off the whole point of your initial blog…
Here’s the thing, I GET what you’re saying, I understand your frustration with hugs and kisses BUT if you read a little more in depth you may see that it’s not all hugs and kisses, some of us try very hard to provide viable alternatives to coping and seeking help and providing many examples of how many people live and cope well with TN.

You mentioned that “all of a sudden you could have control again” not all of us have that luxury, despite our best efforts. TN is not a one size fits all disease nor is there a one size fits all answer on how to live with it.

Some of us have bad days, and just need someone to commiserate with us, some of us have great achievements and just want someone to celebrate with us.
Some of us need suggestions on how to cope, some of us need to read of what others with TN have done to get to a good place…etc etc…
That’s what a community of support Is all about, in my opinion.
We all need different things,we all can offer different things.

Sometimes a person just needs to feel like they’re not alone, coming to a community of people who understand what it’s like “Living with TN” to varying degrees can be so helpful. I have never met anyone with TN before coming here…finding people who understood the ups and downs , the pain, the various meds, frustrations with doctors AND hearing the different suggestions of available surgeries and treatments, and personal stories of their successes and failures has helped me immensely.

By all means feel free to provide the harsh reality to new sufferers, I’m sure there will be some hugs and kisses to comfort and provide some balance.
As long as we’re all respectful of one another…
(( Tina )) Mimi

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My condolences for the loss of your Father inlaw Tina.

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Tina, while I do not agree with everything you say, I DO think that this support group is for you, or anyone else for that matter. While you may feel very passionate and "strong" right now, there may be a crack in your armor at some point. What I DO disagree with is that you have generalized everyone based on YOUR perception of the disease. Pain is completely subjective to each person and how they deal with it. Plus everyone's case is different. I agree that this is not "the worst" pain I have known, necessarily. When the lightning comes, it is pretty intense, but thankfully only lasts a few seconds to a minute. It's the inconsistency of the pain, the variability of the triggers, and the constant dull pain, those are the things that wear you down. Add the medicines in and the fog that goes with it, it becomes very depressing. It is a hard pill to swallow, knowing that you used to be able to function at 110%, pain free and with no drug fog, and now you "watch" yourself struggle even to come up with the correct word to use in a sentence. You also said that you knew someone that had cancer that you were she sure went through more pain than any of us, and now her children are without a mother. We should be thankful that our kids have a mother in a fog, rather than a mother in a grave. I agree and disagree. I compare this to being pregnant, I hated my pregnancy from the get go. I was miserable and made everyone else miserable. Delivery- hooyah! I would do that all over again:) Yes, the pain hurt and was intense, but I knew that there was an end to it. So I guess I am rather a sprinter for pain as compared to a marathon runner. And I'm not so sure that the kids would rather have a mother in a fog. They want their mother to be there like she was. Period. As morbid as it sounds, sometimes I think that cancer is an easier diagnosis. Either you are cured or you die. There is an end. There is not usually a prolongation for the rest of your life. And usually cancer doesn't present with excruciating barrages of pain. When will the next be? Wondering that when you are having a "good day", what is going to trigger it to ruin it? Having to eat soup every day to prevent the "chewing trigger". So, no, not the MOST painful disease known to man. It is just the one that wears you down slowly. Bit by bit. Like water over a rock. It wears on your psyche. You become like a drug addict. Trying any and every treatment possible. Playing the "insurance" game by following the treatment pathway to see which works. Eliminating each one as you go, making it even more frustrating with every failed attempt. As you mentioned that this is not a "disabling drug" and there is no reason that people can't work. I am happy that you still can. I am farely new to this diagnosis and appreciate the support I get here. I am not as "touchy-feely" as most, and it was a big step to just join the group. But it is nice to get different perspectives on the disease. What works for one person or another. I AM in the medical profession and am still young (40), so I am struggling daily with the effects of the medication. I have an appointment with a chiropractor AND a neurosurgeon to try and deal with this. I have had to quit the tegretol because I could not tolerate it. I am not willing to give up my profession that I have worked so hard for, just to surrender it to this thief that steals your very identity. So, no, not everyone is a "quitter" here. We are all working hard to deal with this. Honestly, it sounds like you are still going through the stages of grief and are still at the "anger" stage. This IS where you need to be, We work together to SUPPORT, not judge, or be "toxic" to each other.
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Jackie,

I came here for the same reason everyone else does. Pain. Fear. To gain a better understanding of the situation that I find myself in.

I'm not special, and I'm not strong or better equipped to deal with it than anyone else.

Here's the problem (and the reason I felt compelled to write something that is obviously ruffling feathers) that I'm seeing - everyone is so busy cutting each other some slack that very little is getting done to promote real life solutions to a very significant problem.

If someone says "My life is ruined" somebody has to point out that it doesn't have to be or that person is going to walk away thinking that their life is ruined because of something outside of their control. Reframing the problem so that they are able to take control is critical.

So I write this to point out that disability and hopelessness are not the necessary outcome. What I get in return is an outraged "But MINE is, you don't know what I suffer!" Fair enough, but that isn't going to help one single person keep working is it? There are a lot fewer practical solutions offered, like the thread one lady started about work from home options, than tips on how to get through disabiity hearings.

I'm just like everyone else, it's reasonable to assume that this isn't going away or improving with time. I am ultimately responsible for my own future. To that end I'd rather spend my time making it work than talking about why it can't. The value of this support group isn't currently worth the price I'm starting to pay (a creeping sense of hopelessness and fatalism), and to be honest what I can offer isn't what people want.

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Tina yours is a voice and a perspective which I think has a place to be heard. I think many without TN have your perspective on this condition ( it wont kill you so get on with it ) attitude,and to them I have no time to listen as they dont know how it feels, but you do and for that reason you have the right to speak and help others with your unique direct approach!

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Tina, I fear you and I have more in common than we think.

I encourage you to stay and share your insight and perspective .
I think I felt very similar to you when I was contemplating joining this group…I was quite angry back then and quite lonely. I think the realization that I had lost complete control over where my life was in that very moment directed me to find a place where I could find some understanding as well as perhaps some insight as to how others coped.
I didn’t expect to find a place where everyone was so understanding and really knew what I meant when I spoke about my frustrations with the meds not working, OR how scary contemplating mvd surgery was, the emotional side effects etc.
I am more of a huggy kissy kind of person, but I’m also a realist and I truly don’t have much patience for a whole lot of woe is me ALL the time.
In any event as I’ve said before, you’ll be surprised how much depth there really is to this site and how much we all try to be there for each other and I think if you give us a chance, you’ll find you can give and receive as much as you want, and like me you’ll be glad you stuck around!
Huge (((((( hugs ))))) Mimi xx

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I would just like to say as a new member i feel that the ONLY people who understand me is the people on this support group. Family and friends can be great, but they dont know what it feels like. Having said that, EVERYONE'S pain tolerance is different. I happen to be very hypo sensitive and my dr explained that what the "average"person feels i feel 3x more pain. Everyone's pain, mental and physical will be different. All i know is we need POSITIVE support instead of a kick in the behind, because ive gone into severe depression after reading a post someone wrote on my wall. We diddnt come here for pity, we came to this site because we knew we needed help and others could help us with that. Also from my psychological perspective anyone at any time is allowed to feel how they want. Its a way to deal with your emotions, accept them, and get over them. I'm a therapist and the worst thing we can do is ignore are true feeling, because once they come too bottled up, you burst. I think if everyone is understanding that everyone's needs are going to be different, i would be a lot more open to actually open up. We Need Love<3

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People are here for support because it is a rare condition and it’s extremely painful. It is nice to have support and seeking support does not make one a ‘loser’ …in any way. You also seem to think this impacts upon peoples abilities to achieve. Not mine. This is a pretty depressing and heartless post.

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As I am new to the group I have been reading through the blogs. I wrote the blog entry, "What support means to me." after reading this blog. I know two people who got TN due to cancerous brain tumors, but that is rare and after 18 yrs I have learned this is not going to kill me though I know this does not hold true for everyone. I have had MVD surgery which landed me 16 days in the hospital, 6 of those days in ICU. I too am a veteran so I understand well what Tommy has been through as the military pounds it into our heads it is mission above all else and you do not complain. I guess what I am trying to say in a very wordy way is we are all different when it comes to TN. I would hope you all would say what I need to hear, not what I always want to hear. There will be times I will need to be encouraged there will be other times I will need to be reminded to get my butt off the pity pot. Support can take many forms.