But You Look Fine

21

Jamie Leigh,

I know, right! Yes, it’s very nice that I look alright. People always expect that you will “get better soon” too. If only people stopped and took the time to actually read about Atypical Trigeminal Neuralgia.

Actually, I made my husband read it once, but it’s like he still doesn’t “get it”. I think he thinks I am wallowing in my illness, or something. Wow. He thinks I am a pessimist. No, I never have been before.

I will admit that when I see him complain about ANYTHING, my resentment grows a bit, because I know that when I was able bodied, and not in chronic facial pain, that I had more energy and was much more of an optimist than he is right now.

Thanks for relating to my vent/rant. We all need it sometimes, I think, or we will explode!

Much appreciated. Hang in there!

Stef



jamie leigh said:

Exactly!!! I'm teaching half days this year because of ATN and other health problems. People ask what exactly is wrong with me and then say, "Well you look good". Makes me feel like they think I'm making it up or something. One of my friends said to just say, "Thank you! At least I look good, just wish I felt good too". Or, we could just say,"Thank you!" and not give a hoot what anyone thinks. There are days I wish some of these people could feel the way we do just for one week. We would suddenly have loads of sympathy.

Take Care.

22

oh,

you're just a bunch of grumpy people. just take a few aspirins, get a good nights sleep and you'll feel better in the morning.get over it...and tell your dentist you're sorry those gold crowned,root canaled ,refilled extracted tooth procedures didn't work. Of course ,it was your fault for not taking proper care of them.And be sure to apologize for being a drug addict. We're weak and unworthy. stop your whining. suck it up. stop feeling sorry for yourself, do you realize what you're putting your family and friends through? pick yourself up and get back to normal. "Are you sure it's not a toothache?".

"Yeah, that must be it, Thanks and by the way x*!!-off!"

23

SF Bill.....you're the best!!

Elaine

24

Hi, Ravenm

Well, I wish that the Neurontin alone helped me, or any of the other non-opiates I’ve tried, but they can’t do the job for me alone. In fact, my current regimen doesn’t ever get me completely out of pain, but it’s better relief than some get, from what I can surmise.

I don’t advocate the use of opiates/pain killers for anyone who is helped by other medications. But, MS Contin is my long-acting pain reliever. Roxicodone (Oxycodone with no APAP) is what I am given for breakthrough pain. I take Valium, as it helps with muscle spasm and anxiety. I take Neurontin because it is supposed to help the other medications work better, or at least how that it was explained to me by one physician. I have also been prescribed Fentanyl Patches, but the dosage is so low that I do not use them currently. They don’t work very well.

I am currently prescribed 800 mg. Neurontin x 4 daily.

Of course, I have been symptomatic since 2003, have tried many medications and am extremely opiate and benzo tolerant.

This is my regimen, and in no way a recommendation. However, it is well documented that some ATN patients do require opiods to control their pain. I just happen to be be one of them.

All the best,

Stef



ravenm said:

I keep hearing pain meds. I am 3600mg of neurontin daily but not pain meds. What are you taking that helps (at all)? I know we can't suggest but what helps you?

25

Thank you so much. I work nights, outside, and at heights and am terrified that opiates would affect my balance or my work. Instead I let the pain scream in my head while I keep my social, "one team one dream" demeanour. I have been taking viocdin and valium to get to sleep when I get home, but my schedule is so erratic it's hard to figure what works. Right now I just finished my show, and my teeth are doing the stabbing ice freeze while I reach out to you guys. It's either that or cry. Thanks for letting me know I am not alone.



Stef said:

Hi, Ravenm

Well, I wish that the Neurontin alone helped me, or any of the other non-opiates I've tried, but they can't do the job for me alone. In fact, my current regimen doesn't ever get me completely out of pain, but it's better relief than some get, from what I can surmise.

I don't advocate the use of opiates/pain killers for anyone who is helped by other medications. But, MS Contin is my long-acting pain reliever. Roxicodone (Oxycodone with no APAP) is what I am given for breakthrough pain. I take Valium, as it helps with muscle spasm and anxiety. I take Neurontin because it is supposed to help the other medications work better, or at least how that it was explained to me by one physician. I have also been prescribed Fentanyl Patches, but the dosage is so low that I do not use them currently. They don't work very well.

I am currently prescribed 800 mg. Neurontin x 4 daily.

Of course, I have been symptomatic since 2003, have tried many medications and am extremely opiate and benzo tolerant.

This is my regimen, and in no way a recommendation. However, it is well documented that some ATN patients do require opiods to control their pain. I just happen to be be one of them.

All the best,

Stef



ravenm said:

I keep hearing pain meds. I am 3600mg of neurontin daily but not pain meds. What are you taking that helps (at all)? I know we can't suggest but what helps you?

26

For people with a bad backache or having difficult ankle and foot pain. They can take vicodin or tylenol and it goes away.... I happen to have some back pain and ankle pain too. That's nothin compared to the ATN pain. We don't get to take vicodin and feel good again. This is what I tell my husband. I think he is starting to understand that this pain we have isn't like anything he can even imagine.

So Stef, I do get aggravated when he complains about these things, cuz I know he has the ability to alleviate his pain.

He wouldn't like it if I complained about my pain, cuz it would be all day long, every day.

There are days when I tell him, there is sooo much that goes on daily with this pain in different ways that it does what it does...AND I don't even tell you. But if you would like me to start telling you...I will.

That usually gets his attention.

Min

27

Yeah, I get that. Peace.

Jackie said:

sorry, no political offense was meant I just think a bit of public awareness would help us all and these are well known people in the world...........

ravenm said:

Ouch, please keep politics out of this.

28

LOL, MIN!!! Exactly.

Most of the time, lately, I don’t even feel like opening my mouth to tell them! Aren’t they they lucky ones?? ;>



Min C said:

For people with a bad backache or having difficult ankle and foot pain. They can take vicodin or tylenol and it goes away.... I happen to have some back pain and ankle pain too. That's nothin compared to the ATN pain. We don't get to take vicodin and feel good again. This is what I tell my husband. I think he is starting to understand that this pain we have isn't like anything he can even imagine.

So Stef, I do get aggravated when he complains about these things, cuz I know he has the ability to alleviate his pain.

He wouldn't like it if I complained about my pain, cuz it would be all day long, every day.

There are days when I tell him, there is sooo much that goes on daily with this pain in different ways that it does what it does...AND I don't even tell you. But if you would like me to start telling you...I will.

That usually gets his attention.

Min

29

No matter who it is, if 1 in 15,000 - 20,000 people or less must be stricken with this monster, I understand your point, I would be for the greater good (and I wouldn’t wish this on anyone, but if it has to be . . .) if it were to happen to a largely known public figure.

Be it Lady Gaga, Eminem, Michelle Obama (as you mentioned) Oprah Winifred, Prince Charles, or the Pope, I am certain they would get the best doctors and pain control available. Not only that, it would shed a spotlight on a disease which can cause levels of daily chronic pain which can bring the toughest of us to our knees.

What would bring a lot of media interest is the levels of pain vs. the fact that it is not fatal!

No offense to anyone who believed this was political. However, I do not believe this was a political, but a theoretical one.

I understand what you mean, Jackie.



Jackie said:
sorry, no political offense was meant I just think a bit of public awareness would help us all and these are well known people in the world...........

ravenm said:

Ouch, please keep politics out of this.

30

Got it. Still, I couldn’t wish this on anyone.

Stef said:

No matter who it is, if 1 in 15,000 - 20,000 people or less must be stricken with this monster, I understand your point, I would be for the greater good (and I wouldn't wish this on anyone, but if it has to be . . .) if it were to happen to a largely known public figure.

Be it Lady Gaga, Eminem, Michelle Obama (as you mentioned) Oprah Winifred, Prince Charles, or the Pope, I am certain they would get the best doctors and pain control available. Not only that, it would shed a spotlight on a disease which can cause levels of daily chronic pain which can bring the toughest of us to our knees.

What would bring a lot of media interest is the levels of pain vs. the fact that it is not fatal!

No offense to anyone who believed this was political. However, I do not believe this was a political, but a theoretical one.

I understand what you mean, Jackie.





Jackie said:
sorry, no political offense was meant I just think a bit of public awareness would help us all and these are well known people in the world...........

ravenm said:

Ouch, please keep politics out of this.

31

Oh, of course, Raven. To wish this on anybody would make someone a nasty person, indeed! Like I said, I wouldn’t wish it on anyone, either. . . . .not even my worst enemy (although I wish some people in my life could feel what it’s like for just a few minutes, just to see what I’m up against).

It’s rare, and that is a major part of the problem. We easily fall through the cracks of the healthcare system. due to the fact that most physicians have never even heard of ATN. There is no poster child for ATN, like there is for a lot of illnesses. One wonders, sometimes, what, if any, type of impact it would have on the attitude of the healthcare community towards us, and in how much money may go into further research.

It’s a mute point, anyhow, as it is statistically improbable. The point was entirely theoretical. I’ve often wondered what would happen if there were more public awareness.

I believe Actress, Jane Seymore (sp?). I think she is a victim of Type I, TN. To my knowledge, she is the closest thing out there to a famous chronic facial pain sufferer.

I think what Jackie and I mean is that, “if” someone in the public eye had this disease, it may help with some of these issues.



ravenm said:
Got it. Still, I couldn't wish this on anyone.

Stef said:
No matter who it is, if 1 in 15,000 - 20,000 people or less must be stricken with this monster, I understand your point, I would be for the greater good (and I wouldn't wish this on anyone, but if it has to be . . .) if it were to happen to a largely known public figure.

Be it Lady Gaga, Eminem, Michelle Obama (as you mentioned) Oprah Winifred, Prince Charles, or the Pope, I am certain they would get the best doctors and pain control available. Not only that, it would shed a spotlight on a disease which can cause levels of daily chronic pain which can bring the toughest of us to our knees.

What would bring a lot of media interest is the levels of pain vs. the fact that it is not fatal!

No offense to anyone who believed this was political. However, I do not believe this was a political, but a theoretical one.

I understand what you mean, Jackie.





Jackie said:
sorry, no political offense was meant I just think a bit of public awareness would help us all and these are well known people in the world...........

ravenm said:

Ouch, please keep politics out of this.

32

oh I get it. Like if someone Bill Gates loved had it, what resources would go to it. And would other people not think we were crazy, whiney, grumpy, lazy, yadda yadda.

I hope this does not take this discussion off track. I just have to fight the desire to lash out and instead use the energy and drive to find doable options. I normally am a "solution driven" person, but I don't see a solution here, just options. Pain vs. pain meds. Pushing thru and not lashing out or curling up on the couch and avoiding the problem. Typing messages to people who understand even if it means I am up till god knows when or letting the screaming face blues win. Maybe the picture "the Scream" was really about a TN/ATN sufferer? It would make sense.

33

That’s ironic because I always said that the “The Scream” was “the poster boy for ATN/TN”. No, it doesn’t take the discussion off track, it’s the point, actually.

I have a lot of days when I feel the same as you describe, not solution driven, just wanting to hide. It’s not who I am, as I’ve always been, like you said, “solution driven”, a bottom liner who likes to cut to the chase and “just fix it”, whatever “it” is, and right now, it seems for me that it is the pain vs. the meds. That’s what the post was about, I guess. I’m tired of my family and friends thinking those things about me. At one time, or another, all of the adjectives you’ve used in your first paragraph you’ve used to describe what people may think of us, one of my friends or family members has insinuuated I’ve turned into.

Whenever I first found this site, I spent a lot of time on here because it was the first taste I had gotten of people who related with what was wrong. Since then, I’ve sort of learned to take my support from it, give back when I can, and go on with life in between. But, whenever you first find this resource, I’ll admit, it’s easy to get lost in it! It’s ok. Take what you need from it. That’s what it’s here for. Then, get the rest you need . . .and know that by just contributing to this page, this site, etc., you are helping yourself and others who suffer with this to relate, to understand and perhaps, to better cope with ATN. We are climbing in the Google ranking all of the time whenever someone types in “Atypical Trigeminal Neuralgia”, and that MAY help doctors to better understand how we feel.

I think that there will be a solution, in time. This may be crazy optimism, but just from the time I was diagnosed until now, there is already so much more information out there about ATN than there was when I began researching it in '09, and I believe that there will be better management, if not a cure, for us. When I began researching this, all I could find on it was a brief Wikipedia definition.

I have to believe that there is a procedure just around the corner, or a better medication, which will be more widely used to treat ATN. Until now, yeah, most of the emphasis in medicine has been treating/curing TN, or Type I. Now that they have a few surgical options for Type I, classic Trigeminal Neuralgia.

Getting away from the phrase “Atypical Facial Pain” is important, because it not only sounds vague, it does not refer to the particular set of symptoms which affect Type II, ATN sufferers. Now that we are speaking up in forums, about this condition, maybe we will be heard!

Hey, but until then, yes, it would be more advantageous for a celebrity, in the place of a young child, as has been documented, to have ATN. But, please don’t think I wish that on anyone! I wish no one EVER had to endure this! :slight_smile: I’m just sayin’.

Yeah, “The Scream” guy looks like I’ve felt a lot of times. That’s why I picked him out as the icon for the page. Right now, he’s the closest thing to a “poster boy” for ATN that we have . . .lol!

Best wishes,

Stef

34

Thanks. For some reason I haven’t seen it. Good to know it’s out there. I spent hours last night thinking about how to pull together and film a PSA for TN/ATN. I remember when Fibromyalsia was a ghost disease and now it everywhere. Maybe that’s the something I can do instead of obsessing about my face/pain/issue/ thing eh?

Stef said:

That's ironic because I always said that the "The Scream" was "the poster boy for ATN/TN". No, it doesn't take the discussion off track, it's the point, actually.

I have a lot of days when I feel the same as you describe, not solution driven, just wanting to hide. It's not who I am, as I've always been, like you said, "solution driven", a bottom liner who likes to cut to the chase and "just fix it", whatever "it" is, and right now, it seems for me that it is the pain vs. the meds. That's what the post was about, I guess. I'm tired of my family and friends thinking those things about me. At one time, or another, all of the adjectives you've used in your first paragraph you've used to describe what people may think of us, one of my friends or family members has insinuuated I've turned into.

Whenever I first found this site, I spent a lot of time on here because it was the first taste I had gotten of people who related with what was wrong. Since then, I've sort of learned to take my support from it, give back when I can, and go on with life in between. But, whenever you first find this resource, I'll admit, it's easy to get lost in it! It's ok. Take what you need from it. That's what it's here for. Then, get the rest you need . . .and know that by just contributing to this page, this site, etc., you are helping yourself and others who suffer with this to relate, to understand and perhaps, to better cope with ATN. We are climbing in the Google ranking all of the time whenever someone types in "Atypical Trigeminal Neuralgia", and that MAY help doctors to better understand how we feel.

I think that there will be a solution, in time. This may be crazy optimism, but just from the time I was diagnosed until now, there is already so much more information out there about ATN than there was when I began researching it in '09, and I believe that there will be better management, if not a cure, for us. When I began researching this, all I could find on it was a brief Wikipedia definition.

I have to believe that there is a procedure just around the corner, or a better medication, which will be more widely used to treat ATN. Until now, yeah, most of the emphasis in medicine has been treating/curing TN, or Type I. Now that they have a few surgical options for Type I, classic Trigeminal Neuralgia.

Getting away from the phrase "Atypical Facial Pain" is important, because it not only sounds vague, it does not refer to the particular set of symptoms which affect Type II, ATN sufferers. Now that we are speaking up in forums, about this condition, maybe we will be heard!

Hey, but until then, yes, it would be more advantageous for a celebrity, in the place of a young child, as has been documented, to have ATN. But, please don't think I wish that on anyone! I wish no one EVER had to endure this! :) I'm just sayin'.

Yeah, "The Scream" guy looks like I've felt a lot of times. That's why I picked him out as the icon for the page. Right now, he's the closest thing to a "poster boy" for ATN that we have . . .lol!

Best wishes,

Stef
35

Forgive my ignorance, Raven, but what is PSA?

Yes, any exposure that we get, especially us atypicals, is a good thing. We need help here. Some of the major research hospitals still do not understand Type II, and call it Atypical Facial Pain.

Yes, ATN needs all of the exposure it can get. People with TN always have the hope that MVD can hep them. I wish medical science had something similar for us. My Neuro, who specializes in head and face pain said they didnt know what caused it. That spoke volumes to me.

Everything has a reason! There is something causing this aching, crushing, stabbing searing feelimgs we have in our TN nerves, us people with ATN.

I am having a bad pain day today. If I come off a bit grouchy, I have a chip clip on both sets of upper gums.

36

A PSA is a Public Service Announcement. Usually a 30-60 second video that can be played on TV or nowadays on the web. BTW. not grouchy at all, just dealing.

37

I know…have been walking the dog and look tanned so people think that I look great. My own family has not even bothered to google the term atypical trigeminal neuralgia. I am the oldest and have looked after my younger sisters my whole life …but have decided to stop doing that. The only way I can deal with this is to treat them as “casual acqaintances” when I run into them. This way my expectations of them are lowered.

38

Everyone with any 'unseen/invisible" illness hears this. I guess they are so dense they expect an alien to come out of the side of our face or actual fire or something to understand that we are struggling. I got it so much from my ex-inlaws, their stress almost killed me due to lupus being made worse from stress. People seem to need a visual aid to know there's a problem. When I finally got past my pride and started using a walker and got a handicapped placard, and got away from my ex-inlaws, things got much better. unfortunately, with just TN, you don't need a walker and there isn't a gadget that can be used as a visual aid, except the face protectors that you can buy for cold weather. Then if people ask what it is, you can tell them you have nerve pain.

THE SOCIAL STRUGGLES of these illnesses limit my life more than the physical part does sometimes.

39

Nat,

I am assuming you are addressing me. Wondered how many could relate. I try to reply to everyone, but withtwo kids, this condition and a debilitated Mom to ttKe care of, I apologoze if I missed a question. I try as well to keep up with my emails, but am not always able to.

When people say this, some sort of insinuation that I look ok, so I must be ok, somehow, that I appear healthy and I am feelimg ok, I usually do my best to explain ATN. If I am having a flare up at. the moment that they tell me or someone aroune me somethimg like that within earshot, I usually do not even take the time to try to explain myself, or I give them the name of the disorder amd tell them they ought to Google it.

Ok. got to my Ipad keyboard. Apologies for type-os made above. I need to shower and don’t have time to correct them, but I type faster than I talk . . . lol, whenever plugged in to my keyboard.

In short, whenever faced with the situation, and it is a time when I am unable to speak due to the pain, I tell the people to look up Atypical Trigeminal Neuralgia. I am always happy when my daughter is around, because a lot of these inquiries come from her friends. She tells them why I am not ever certain that I can do things other Moms do on a moment’s notice. Or if my husband is around, he gives a brief explanation for me.

If I am feeling alright, and that is usually when my meds are working, which is hit and miss here lately, I will give a detailed description of Atypical Trigeminal Neuralgia complete with stats on how rare this monster is.

Best wishes back at 'ya!

Stef



Natalie said:

Hey

What are your replies to the people who say you look fine? are you any better? I am starting to just bite my tongue as I am fed up of repeating myself.

pain free wishes to you all

Nat xx

40

Exactly, Sheila. The social problems only compound what we already have to deal with. It’s like they think our faces should be red, swollen, or something of that nature.

My in-laws (from my late husband) try to compare my pain with his mother’s back pain, and you can’t. There’s no way. ATN in advanced stages, like we have, can feel like Stage 4 cancer, I’ve read. I believe it, from the levels of pain I experience on a weekly basis.




Sheila said:

Everyone with any 'unseen/invisible" illness hears this. I guess they are so dense they expect an alien to come out of the side of our face or actual fire or something to understand that we are struggling. I got it so much from my ex-inlaws, their stress almost killed me due to lupus being made worse from stress. People seem to need a visual aid to know there’s a problem. When I finally got past my pride and started using a walker and got a handicapped placard, and got away from my ex-inlaws, things got much better. unfortunately, with just TN, you don’t need a walker and there isn’t a gadget that can be used as a visual aid, except the face protectors that you can buy for cold weather. Then if people ask what it is, you can tell them you have nerve pain.

THE SOCIAL STRUGGLES of these illnesses limit my life more than the physical part does sometimes.