What people don't see

General General TN & GPN (Old Site)
61

I too found being on support web site for TN sufferers and working with a friend on her Africa foundation has lifted my spirits. I also just had a conversation with dr. about how do you best support your body through chronic illness. the fatigue is a bit much. maybe a medication to help with the non clinical type depression that comes with such an illness also vitamins and do what you can when you can is how i live with this soon to be ten years of ATN and Ramsey Hunt Syndrome.

There is this friend of mine who always says, how ya doin? ya look good!. i just quit explaining it years ago and a very wise nurse once told me you dont' owe any explanation to anyone. but i hear what you are saying because this illness doesn't leave a visual mark. so i just say,thanks but keep praying for me.

so nice to have support here and other places to know you are NOT alone!

blessings for pain free days!

62

You are so right! I am a people person, retired but busy. I volunteer at the local elementary schools where I read to the second graders and I also volunteer at our hospital. I don't like to sit at home and do nothing nor do I like to sit and watch TV for hours on end. But there are times when I have cancel or get a sub. My family especially does not understand. They still think I am super MOM and I should keep running on a 24 hour clock.. I have begun to shrink into myself and stay at home just because I feel so bad and I think to myself, they will just have to deal with it themselves. I have taken care of them for 40 years they need to do the caring now.

63

^my children don’t get it either. I show up and put on a happy face most of the time. Christmas was a bad pain day for me but I showed up I also left early lol.
People never even hear of this. I’m a paramedic and I know if I hadn’t had the training I’ve had I would of had no clue what this was. I also had more compassion for chronic pain when before I didn’t.
I’m can’t work right now but I am going to look at giving my time volunteering. I have a surgery feb so I can’t right now.

64

Hi Cheryl, the kitten is called Poo Chee, pronounced Poochie as in dog!! I just like the name, and kitty doesn't realise it actually is a pet name for a dog. I give the Chinese spelling to the vet, and tell people it means 'sweet pretty thing'. But really that's nonsense!! LOL. He is a Tonknese cat, which is a recognised breed from crossing a Siamese with a Burmese. He is a lightish to mid brown all over except his 'points' where like a Siamese he's a darker brown. Just beautiful. Not a fluffy coat, sort of flat. He has a lithe body in keeping with his oriental background, and is will not be a particularly large cat. The Burmese blood in him means he's not as angular like a Siamese, but a little chunkier. He has a relatively long , thin dark tail, like a rats!! In fact at times he rather looks like a big rat!! I'm not interested in breeding, so he'll be neutered in a few months time. He's totally full of energy and I am so happy to have made the decision to acquire him. I'd thought about it for years. And yes he already sleeps in the bed with me. Such fun. I try to have him exposed to as many people as possible, and so far he is quite a social cat. He's happy to jump on anyone.

Cheryl said:

It's so nice to find people with so much in common,besides the pain.

I too am a Gramma. I have 4 of them and I just love to see them and say hi on the phone but I know I couldn't do it all the time. Which sucks but I count my blessings that I have them and it is getting easier as they get older. My dog and cat keep me company and keep me somewhat on a schedule. Whenever I'm up past 11:00 pm both of them come and bug me to come to bed, they sleep in my bedroom with me. I didn't think pets would do that but I guess we are closer than I thought.

I would love a kitten!! There just the cutest ever! Maybe down the road, my cat is not the friendliest to new comers. What is the kitten's name?

Another fitful sleep last night, I got up late, still having coffee and now enjoying life while I look out my window and see the sun shining and it's warming up today! These are the days that I am so glad that I live alone with no one to answer to and no job that I have to rush to!

65

Yes your are so right to keep out there and busy. The shrinking into oneself is a problem but only by doing what you're doing will you avoid complete atrophy. And with out some external stuff in your life you can end up too inward looking and any negative feelings tend to just magnify. I do hope your family will come to see or appreciate your situation, but, no doubt as you've already worked out, the realisation of just what your situation and reality is, can take a long time if at all. I think we just have to accept that. Our words and 'explaining' can seldom bring about their comprehension. Especially with a family to whom you've always been the mum, the person who's always been there. As you say it is their turn to care now, but that can be a hard thing for children to grasp. They cannot / don't want to know their parent is having difficulties.

ktznana said:

You are so right! I am a people person, retired but busy. I volunteer at the local elementary schools where I read to the second graders and I also volunteer at our hospital. I don't like to sit at home and do nothing nor do I like to sit and watch TV for hours on end. But there are times when I have cancel or get a sub. My family especially does not understand. They still think I am super MOM and I should keep running on a 24 hour clock.. I have begun to shrink into myself and stay at home just because I feel so bad and I think to myself, they will just have to deal with it themselves. I have taken care of them for 40 years they need to do the caring now.

66

I took in a foster dog in August which has been a wonderful experience. Tonight I was calling a potential adopter and had to apologize for my brain fog, haha. I feel like such a dope tonight...I was making no sense and trying to cover it up after the fact. I'm only on 900 mg Gabapentin daily, nothing else, but the bump up to 900 has sent me to goofyville. It is a little worse tonight because I had a back injury in May and was working on my feet all day and am feeling a bit of throbbing/tingling back there. Workers compensation is a joke, I am just now scheduled to see a dr. at the end of January...9 months after the accident.

67

Wow I’m so sorry to hear that. I get the foggy part. When they would bump my meds up I would tell my kids and sleep all day.
I hope you get help with your back too.

68


I don't know if it will help you or not but I get some good relief from a chiropractor who sets the Atlas. When my Atlas is out I am in a lot of pain. After it is set in place I get a lot of relief. Some things work for some people some things don't. This is a very easy adjustment compared to all the procedures for Tn. and you can get almost immediate results. It's not necessary to see a neurologist or any other doctor. Just find a chiropractor who sets the atlas. There are also NUCCA chiropractors who do the same thing but I didn't get any relief from that type. I really hope this helps. I am a strong 62 yr old man and I can't immagine someone like yourself, being pregnant on top of everything and having to deal with this pain.
Shadirah said:

Hi guys, I too suffer from the monster and this ifs my first time experiencing a pregnancy with it. It's debilitating, as I fight to eat, drink, talk etc. I have two boys and a husband and I feel so bad for them. They are forced to have to watch this torture daily and th hat makes me sad. I am on tegretol 200mg at night, but that's not doing much. Monday I go a pain specialist to see what else I can do or take. Never thought my pregnancy would be like this. I'm scared about the health of my baby, I'm scared that I will not be able to care for my children even after the pregnancy, I'm just a basket case. No one seems to have answers for me. I just want to get through this pregnancy we without being in this pain. How do you increase the chance of remission? What am I doing wrong? I'm praying that Monday will be my day of solutions. I need help so bad. I'm 22 weeks pregnant. Can someone just offer me something.
69

I must say, you couldn't have said it better. I feel just the same way. No one knows how we suffer except each other that has this.

kerry said:

I just had an Aunt attack me, and ask me then "Well then, How are you sitting her talking to me if you are in so much pain then?" I said, Well it's a choice. I can either choose to get out of the bed each day and live my life and not feel sorry for myself or I can lay in bed and be in pain when I wake each morning feeling like I got ran over by a Mack Truck. Besides taking daily meds, praying, reiki, therapies, and getting monthly shots directly in my scalp and skull and shoved up my nose, I choose the first because otherwise I wouldn't have a life, and If I were to choose to Lay in bed and Just be in pain instead of getting out and living my life-1) I feel more of the pain 2) I think about the pain more 3) I am in a more depressed, anxious state. 4) I would miss out on all of you wonderful people. So the next time you wonder why I am acting the way I am or don't seem as vivacious or happy, or seem a little off, it could because I am a wee bit of pain you can't see 24/7 that wears on my mind/body/spirit. I don't tell you this to feel sorry for me, but so that you can understand my pain, and STOP JUDGING ME AND OTHERS WHO ARE IN CHRONIC PAIN AND POSSIBLY RELY ON THE WONDERFUL WORLD OF ALTERNATIVE HEALERS, GOD, PAIN MEDS, ETC. We made it here because we relied on those things and we relied on you, family and friends to show support and understanding. Haven't you ever had a silent struggle you wished someone understood better before they cast judgment on?

That's what I do say. ;) Take care of you.

70

That is just how I feel. No one seems to care but us. Everyone thinks nothing is wrong with us. Even my husband of 48 yrs. seems to be numb to my pain. I have suffered for, I'm in my 14th yr. It is a curse. Pain never really leaves us. I as well calls my sister and use her for a sounding block, as she does me. Hang in there.

annoyedinaz said:

Hi Stephanie- I can relate to you and all those that replied. Having this is like living a secret double life sometimes. I don't tell everyone about my ATN because let's be honest, most don't care. I don't mean to sound cynical but many have burdens they don't share.
I am married with 3 active teenage sons. After being diagnosed 4 years ago, I tried so many different ways to stop the pain (which for me is more a constant medium-high level pain that lasts for hours). Right now, I am doing ok with a med cocktail. I try to get rest, keep ice packs on the ready and try to occupy my mind elsewhere when the pain begins. For me, I WILL NOT LET ATN TAKE MY LIFE! I get frustrated and cry a lot but then I call my sister.
In addition to the meds, ice, occupying my mind on something else, I have 1 person I can call and complain to when needed. My sister let's me just vent. Then she vents about her life too. Find a person. Good luck and God bless.
71

I agree with you I only wish we all were closer together so we could talk in person. Just beause no one understands it. I just wish there was someone close that has it so we could be friends.

Cheryl said:

Just read so many heart warming and heart retching responses. This is a very common thread between us! I just went through hell trying to up my meds of Gabapentin. Allergic to Tegretol and now realizing allergic somewhat to Gabapentin, only went as high as 800 mg and I thought my head was going to explode, must have upped my high blood pressure and I couldn't think straight at all.

I'm on the mend, back down to 600 mg. For some people that low amount must be a joke. Just can't tolerate these types of meds. Couldn't imagine if I had to live with someone going through this not too mention a job or a "social life". I looked like crap and felt even worse. And I was still in pain. But as of last night and more today I have a clearer head and am functioning better. Prayed a lot and just relaxed and let it be.

Kcall, I have been there. I actually sit in an office chair at the kitchen table. I have a big window that faces out to the back yard and I can see and hear the birds and see my dog when he's out there. A small T.V. is on the table and so is my laptop. A true picture of a single gal who's able to accommodate herself without bothering anyone else. It has it's perks, lol.

I bought some Tiger Balm last night and so far so good. Hard to get used to it's strong lingering odor.

Othellocop, you made a good point......"at least it's not cancer". easier to appreciate when the pain has subsided and when we're not in that "dark" place. I'll try to remember that!!

I've been told to take B12 supplements and I was but I think I need to pick up some more. Thanks for the reminder!

It's so hard to feel JUDGED.....I too had someone not believe me when I said - that I cannot sit in a wooden chair for very long, it effects not only my back but my entire spine up to my, bad neck and then of course into my jaw and face!! I was at another woman's house one day a few years ago having coffee, when all of a sudden she smirked (like she had just caught me in a trap) and said....I knew it, I've been timing you and you have sat in that chair and not gotten up for 30 mins.) I was shocked at how someone could be so cruel and calculating, I thought she had just invited me over for a coffee as a "friend", turns out she had a plan to discredited what I had been saying. My mouth dropped and then I looked her in the eye and said "if you'd been watching, I have been squirming in this chair the whole time. trying to be social and not be rude by getting up in the middle of your conversation." I also pointed out that this chair had a cushion on it. I got up and left and have not seen her since. Not all people are that bad, but she sure opened my eyes at how I might be perceived.

I like the saying "Don't judge me, til you've walked a mile in my shoes", sadly I'm sure I have judged others in my mind but since this all has happened it's made me more compassionate to others. A silver lining.?

Praying for you Shadirah, in this pregnancy. Couldn't imagine that!

Tree69, I too have lost a lot like perhaps some others here as well. When my Mom passed away in 2005, I just couldn't get over it, I've never felt such anguish and she lived to a good old age. I often wonder if that stress pushed my TMJ over the edge and then brought on Fibromyalgia, then the Fiancee left, then the money dwindled, and a bankruptcy thrown in for good measure, then on long term disability after the TN came on board! I've had TMJ for 23 years but it was only in flare ups, since 2005 it seems like it's worked it's way up to everyday and just won't stop...which is always a concern that it will cause a flare up in the TN. If I seem anti social to others I've come to grips with it, I tried for too long to "fit" in, at my own expense. If I have to treat myself like a "little princess" then so be it. If I can't rake my leaves properly or shovel my walk as good as the next guy, then tough is what I say now.

Like you posted Stephanie "What people don't see" is the crux of the problem, if we were in a wheelchair for example, a visible sign of what's what, it would be different. After almost 7 years of the beginning of the end of my so called "social life" I've learned not to care as much as to what other's might think. It still hurts though.

It feels good to know we're not alone in the bad stuff and it feels good to know that we all share a form of appreciation and strength to carry on! We share, we learn from each other! I cry quite a bit these days and they are tears of joy and realization of others in pain, physically and emotionally, when I read what all of you have to say. I had a counselor once tell me that I need to cry, I hate crying. I would refuse to cry!! That was about 2-3 years ago and she couldn't have been more right! Perhaps I have a lot of pent up tears. There's a stage of grief!

My 30 year old son took me to pick up a few groceries last night and it was short but really nice, just me and him. We were chatting about food and cooking and joking around and I said something to him like..."boy you must have had a good Mom" and he said something that broke my heart for a minute...he said "ya.."had"....ah poor guy, I felt like it was the first truthful moment for me and him since all the pain became too much (5 years) So we had a quick chat about it and as a Mom the first thing I said to him was "I'm so sorry, this must have been hard on you the way I've changed", he said "ya", and a funny thing happened, we both smiled and had a quick hug and continued joking around and shopping and chatting, just like we used to do!! :)

Wow!! It was the best thing that could ever have happened. In that moment in a grocery store of all places, he and I finally got things out in the open!! A huge burden lifted that was causing a wedge between us.

Geesh, can you tell that I miss talking, now I go on and on by writing, hee hee hee! Sorry about that!

I'm finding this so therapeutic! Working through the stages of grief! I don't think I have really done that!

Thanks to all of you and I pray for peace for all of us!

72

In a way, we have to pity ourselves, no one else will. I did not take it that way at all, if it makes you feel better.

Stephanie said:

I also agree that it could be worse and I am very grateful it's not. I didn't start this discussion with a pity party in mind. I am so sorry if anyone took it that way.
73

It is essential we have an environment to vent, rage, cry, laugh where we will be understood and validated. Feeling a bit of self pity? Can't say that I blame you. Frankly there's a place for that, and I think we all do it at times then move on.... we have ups and downs and accepting that about yourself helps. You don't have to be 'up' all the time, nor can you. Cry on my shoulder any time because I do understand, we all probably do. No one will judge you here. And because one day I will need a shoulder too. Much love to you bunch of heroes.

74

I have ATN and symptoms that others don't have. When I have frontal facial pain, I also get visually foggy. They are DIRECTLY correlated. It is instant. I have been mentally foggy too (not med related, because it isn't often enough). I haven't been able to drive for months, nor work. This disease is so WEIRD! Oh, weather changes... Cold weather (especially in Nebraska - where I live)... Eating, Talking, Showering, Brushing my Teeth, Etc... So many things can spark this PAIN. ATN can be constant... and in my case, so can my fogginess. The pain can be an ache, a burn, or the sharp pain like in TN. I think mine may have been caused by several Traumatic Brain Injuries from many, many years ago and then started up by a dental issue a couple of years ago.

Yes, it is unseen by our friends and family. I am lucky enough to have a very supportive mother/chauffeur and other family and some great friends. Of course, I don't keep in touch with as many friends as I had before. Many of my family don't even know that I have this. I almost don't like talking about it because I cry when I do. One of the things that keeps me sane is having a warped sense of humor about it. Laughing is SO important... even if you have to do it on the inside because smiling hurts your face on the outside. :). Sure glad I know how to type, because I cannot see clearly most days. But, sometimes, that isn't a bad thing. ;) Sometimes not seeing clearly isn't bad. LOL

One thing we have to remember... We now ARE a family. We ARE supporting one another. We DO understand. I know it isn't the same as the people we see everyday... but, when you're feeling the need for support or a rant or just to know that someone else is going through the same thing... LOG IN... chat with one of us PLEASE. We are here! We ARE family!

Many hugs to all of you.

~Sara

75

I got foggy before any meds... That's the bad part. It isn't med related. :(

76

I know the feeling. My coworkers don’t understand my pain and expect me to talk and do my job regardless. My family does understand, luckily. But I feel like a broken record whenever I keep saying “I’m hurting…again”. I try to only let people know when the pain gets bad enough that I have to stop moving, talking and cover my face.

77

Since I got sick, all my so call friends ran away. They stopped calling. Stopped sending me mess. On Facebook. I think that’s one of the hardest things to accept with this also. Not like they are going to get it or something ! Ohh well I guess they truly wasn’t friends. I know I wouldn’t walk away from a friend in need.

78

Sorry to hear that marina, you definitely have friends here so keep writing, we WANT to hear from you!

Karen

79

As far as a social life, I try to go to friend gatherings as much as I can when I'm feeling up to it. Sometimes I have to leave after an hour when the headaches start to crank up from overactivity though but it helps to at least make a showing. I have to change the type of activities I can get involved in, much more mellow low-key stuff. I'm a type A and love to talk but as you all know talking sets off the pain so I have to do alot more listening. We all definitely have to make adjustments, so far my friends have been very understanding but it wasnt a huge change for me since my husband and I are pretty much home bodies anyway. It's hard for our friends and family to almost always have to adjust to "our" schedule, we can only try our best to socialize when we are having a "good" day which may not be that often for many of us but we do what we can.

80

I posted a Trigeminal Neuralgia awareness ribbon on my Facebook page and only 2 of 113 friends have even acknowledged it. I was the middle of three girls and had a sheltered life so I never really had friends that I hung out with like my sisters. They were my best friends and still are. My parents both died 4 & 5 years ago so my sisters, husband and son are what get me thru each day. I’m so greatful for friends here to talk to that truly understand.