I was wondering about other peoples experience with their illness and their friends and family, also with their doctors. I learned today that I am my doctors only GPN patient. He is very awesome and listens to what I have to say and even asked me today what other people on the site have tried. He feels as I do that surgery should be the last resort and is trying his best to treat me however he can. GPN is in a sense a chronic illness but it isnt something people can look at you and see which makes it hard. I had a lot of coworkers and family who were up to date on all the tests I was going through when they were trying to diagnose me. When the final diagnosis came up it didnt seem as serious to some people as it really is. I am pretty good at sucking it up and getting on with the day cause I have a very hard time with accepting it is even there. I dont really let people see that it affects or that I even have it. Sometimes at work it was unavoidable but other than that people dont really know. They know I sleep a lot but for the most part even though I tell them I dont think they get it.
I had a great difficulty accepting that I had this. Even until about 9 months ago when I saw the ENT because my vocal chords seemed like they were straining and he scoped me and said nothing was wrong-I hadnt really believed it. So what do all of you do? Do I need to show it to people more when I dont feel good? Do I give them long speeches and definitions about what it is and how it affects me? I really dont know what to do. Any stories or experiences would be greatly appreciated!
Oh Chrisa,
I know this all too well!!! People can’t see a problem so it doesn’t exist! They don’t get that you cant function the way you did, or get how rough it can be, or that it’s always niggling at you one way or another intruding into everything, whether it’s not wanting to face a night out and be the only sober one there becasuse of the meds, or just not go at all, and let yourself get more cut off…
There are so so many things about this, there are the meds, the social implications, the professional, financial,and fertility issues that all come along with it and people just don’t get it.
For me, a lot of the time, I can be very flippant about it, or have very dark humor, that or just say " sorry ignore me I’m having a spazz attack," or spazzy, or spazztastic. Yes I’m allowed to be politically incorrect since I refer only to myself, and anyway, I am a tegretol retard …( it does exactly what it says on the tin)
Oh I understand it all well and I’m really not sure how to beat it, it’s something that I truly believe you go through the stages of grief with, and I don’t care how melodramatic that sounds, but I reckon it;s just part of the parcel.
I’m glad you have a good doctor, having some supportive doctors behind you counts for so much, especially when they take on board what you are saying, and the information that we can share with them, because so many think they know it all and that we know nothing and give the " don’t believe everything you read on the internet" scathing glances at the merest mention of having read an article on the subject.
Good luck on the duloxetine/cymbalta, they put me on it briefly, and it made me sick to my stomach, 24 hours of V and d, and relentless wretching so not the drug for me but I really hope that it gives you some relief.
Much love to you,
Gracie x x x
Grace Mackay said:
Oh Chrisa,
I know this all too well!!! People can't see a problem so it doesn't exist! They don't get that you cant function the way you did, or get how rough it can be, or that it's always niggling at you one way or another intruding into everything, whether it's not wanting to face a night out and be the only sober one there becasuse of the meds, or just not go at all, and let yourself get more cut off......
There are so so many things about this, there are the meds, the social implications, the professional, financial,and fertility issues that all come along with it and people just don't get it.
For me, a lot of the time, I can be very flippant about it, or have very dark humor, that or just say " sorry ignore me I'm having a spazz attack," or spazzy, or spazztastic. Yes I'm allowed to be politically incorrect since I refer only to myself, and anyway, I am a tegretol retard .........( it does exactly what it says on the tin)
Oh I understand it all well and I'm really not sure how to beat it, it's something that I truly believe you go through the stages of grief with, and I don't care how melodramatic that sounds, but I reckon it;s just part of the parcel.
I'm glad you have a good doctor, having some supportive doctors behind you counts for so much, especially when they take on board what you are saying, and the information that we can share with them, because so many think they know it all and that we know nothing and give the " don't believe everything you read on the internet" scathing glances at the merest mention of having read an article on the subject.
Good luck on the duloxetine/cymbalta, they put me on it briefly, and it made me sick to my stomach, 24 hours of V and d, and relentless wretching so not the drug for me but I really hope that it gives you some relief.
Much love to you,
Gracie x x x
LOl well you have made me nervous to go on the cymbalta! LOL joking i am not going to try it til tomorrow. but yah i have days where i literally feel drunk. it is crazy. like today my face really hurts and i feel like i just took a ton of meds even though i didnt. i feel really jerky and tired and just strange.
yah i told my doctor about the site and a lot of things and he said oh i believe everything i read on the internet i actually have my degree from facebook LOL he is just being silly but yah. i am finding that out about the drinking it makes me sick to my stomach to even have a beer. and the last time i drank which is not often at all i got so sick i had to skip 3 doses of meds and could not stop retching. i didnt even drink that much-it was terrible!
life was sucking for the last ten months so i even smoked (cigs) and they irritated the hell out of the GPN. it was such a bitch but i did quit and it seems somewhat better. i guess it really is stages of acceptance for me. but i do wish that people in my life understood it not for the sympathy issue but so that when i dont feel well i dont get looked at as being lazy or overexaggerating that type of thing.
Hi,
Your message really touched me. I’ve been suffering with GN for over 10 years now, and the lack of validation from others has been nearly as difficult to deal with as the illness. I’m a single mom, and my workload is more than enough for several full time people… making it through the day is often a herculean task, yet everyone looks at me like I am just the same as them. Even when I try to say I’m suffering - which I rarely do around most people - it simply gets dismissed, like they think it’s a run of the mill headache or sore throat or something. I just want to scream at the top of my lungs, and tell someone the truth of what I’m going through. My boss had breast cancer. She was diagnosed and had surgery. Cancer is a terrible disease, and I’d never want to suffer it, but the only treatment she underwent was a surgery, and then she went on with her life… yet day after day, someone comments on her strength for surviving. Meantime, I have to find a way to survive horrific pain and suffering without any knowledge of how it can get better, and no one seems to care. It really does make it all so much worse. The lack of social awareness. The lack of understanding and support. The feeling of being alone in your suffering. It’s like, because no one knows what it is, it simply does not exist. I have found very little support and understanding in family, friends, or doctors. The only one who knows really anything of what I’m going through is my daughter, who tries to ignore it because it scares her to see me like that. I guess that’s the most valuable thing about websites like this… We all know the truth. We know the fear and the pain, and the hopelessness that can come. And we know the strength that it takes to endure. We need to support one another, so that we know there’s at least someone out there who gets it, and reminds us that we aren’t alone.
Michele,
You are so right about so much of this, I haven’t been through a fraction of what you have with this, and can’t imagine how to begin coping with all of the additional things you had after surgery.
The cancer thing is so acurate, and it’s one of those comparisons that everyone makes, but no one talks about, no one wants cancer, but people understand it so much better and acknowlege it, where as with this no one does, but people don’t realise how much it actually invades our lives, No one would want cancer, and no one is saying that it’s easy, and obviously a terminal issue is a different thing entirely. But when it’s not, you have your treatment, you can fight it, you know what you’re dealing with, your doctors know what your dealing with, your not made to feel like your delusional, or that your pain is psychosematic or something, it is treated with the gravity it deserves.
So often we are not
I could go on and on about this, but I think you’ve said it all for me,
We need the support just as much, and hopefully now that we have this group in place for everyone to get together that will make it a little easier all round.
Much love
Gracie x x x
Michele Squeo said:
Hi,
Your message really touched me. I've been suffering with GN for over 10 years now, and the lack of validation from others has been nearly as difficult to deal with as the illness. I'm a single mom, and my workload is more than enough for several full time people... making it through the day is often a herculean task, yet everyone looks at me like I am just the same as them. Even when I try to say I'm suffering - which I rarely do around most people - it simply gets dismissed, like they think it's a run of the mill headache or sore throat or something. I just want to scream at the top of my lungs, and tell someone the truth of what I'm going through. My boss had breast cancer. She was diagnosed and had surgery. Cancer is a terrible disease, and I'd never want to suffer it, but the only treatment she underwent was a surgery, and then she went on with her life... yet day after day, someone comments on her strength for surviving. Meantime, I have to find a way to survive horrific pain and suffering without any knowledge of how it can get better, and no one seems to care. It really does make it all so much worse. The lack of social awareness. The lack of understanding and support. The feeling of being alone in your suffering. It's like, because no one knows what it is, it simply does not exist. I have found very little support and understanding in family, friends, or doctors. The only one who knows really anything of what I'm going through is my daughter, who tries to ignore it because it scares her to see me like that. I guess that's the most valuable thing about websites like this... We all know the truth. We know the fear and the pain, and the hopelessness that can come. And we know the strength that it takes to endure. We need to support one another, so that we know there's at least someone out there who gets it, and reminds us that we aren't alone.
Grace Mackay said:
Michele,
You are so right about so much of this, I haven't been through a fraction of what you have with this, and can't imagine how to begin coping with all of the additional things you had after surgery.
The cancer thing is so acurate, and it's one of those comparisons that everyone makes, but no one talks about, no one wants cancer, but people understand it so much better and acknowlege it, where as with this no one does, but people don't realise how much it actually invades our lives, No one would want cancer, and no one is saying that it's easy, and obviously a terminal issue is a different thing entirely. But when it's not, you have your treatment, you can fight it, you know what you're dealing with, your doctors know what your dealing with, your not made to feel like your delusional, or that your pain is psychosematic or something, it is treated with the gravity it deserves.
So often we are not
I could go on and on about this, but I think you've said it all for me,
We need the support just as much, and hopefully now that we have this group in place for everyone to get together that will make it a little easier all round.
Much love
Gracie x x x
Michele Squeo said:Hi,
Your message really touched me. I've been suffering with GN for over 10 years now, and the lack of validation from others has been nearly as difficult to deal with as the illness. I'm a single mom, and my workload is more than enough for several full time people... making it through the day is often a herculean task, yet everyone looks at me like I am just the same as them. Even when I try to say I'm suffering - which I rarely do around most people - it simply gets dismissed, like they think it's a run of the mill headache or sore throat or something. I just want to scream at the top of my lungs, and tell someone the truth of what I'm going through. My boss had breast cancer. She was diagnosed and had surgery. Cancer is a terrible disease, and I'd never want to suffer it, but the only treatment she underwent was a surgery, and then she went on with her life... yet day after day, someone comments on her strength for surviving. Meantime, I have to find a way to survive horrific pain and suffering without any knowledge of how it can get better, and no one seems to care. It really does make it all so much worse. The lack of social awareness. The lack of understanding and support. The feeling of being alone in your suffering. It's like, because no one knows what it is, it simply does not exist. I have found very little support and understanding in family, friends, or doctors. The only one who knows really anything of what I'm going through is my daughter, who tries to ignore it because it scares her to see me like that. I guess that's the most valuable thing about websites like this... We all know the truth. We know the fear and the pain, and the hopelessness that can come. And we know the strength that it takes to endure. We need to support one another, so that we know there's at least someone out there who gets it, and reminds us that we aren't alone.
i totally understand you! i became a single mom about 10 months ago and trying to do that on top of work and survival is rough! in the summer when my son is out of school i get a lot of sleep but now during the school year it is so hard! i worked at an answering service which just made it worse but was the only job i could get around my hours. sadly i will have to stay in this field or something similar because of my schedule.
my medical ID wouldnt stay on my bracelets so now i wear it on my second earring (LOL) but it is good because people ask me about what is wrong with me and i get to tell them as best as i can.
i understand what you are saying about the cancer thing. i know one person who has had GPN and no longer does but that is it. it simply went away on its own! sounds like a miracle to me! good luck with everything. i find it such a help that this site exists!
Chrisa, I’ve only just noticed this reply,
This gets so complicated! one reply should follow another, end of story!!! Anyway I will reply to you now that I’ve found it, I’m still smoking cigs, trying desperately to stop but thankfully they don’t irritate my throat in anyway, and they;re the first thing I reach for when it gets bad, as for drinking, nope, not a chance, 1 beer is my limit, and then I fall asleep, if I have any more, which doesn’t happen anymore, but if I do, I am the cheapest night out there is, and the hangover lasts for days, it;s brutal!!!
Anyway even thinking about a drink makes me feel ill just now so on that note I;ll away, much love
Gracie x x x
LOl well you have made me nervous to go on the cymbalta! LOL joking i am not going to try it til tomorrow. but yah i have days where i literally feel drunk. it is crazy. like today my face really hurts and i feel like i just took a ton of meds even though i didnt. i feel really jerky and tired and just strange.
yah i told my doctor about the site and a lot of things and he said oh i believe everything i read on the internet i actually have my degree from facebook LOL he is just being silly but yah. i am finding that out about the drinking it makes me sick to my stomach to even have a beer. and the last time i drank which is not often at all i got so sick i had to skip 3 doses of meds and could not stop retching. i didnt even drink that much-it was terrible!
life was sucking for the last ten months so i even smoked (cigs) and they irritated the hell out of the GPN. it was such a bitch but i did quit and it seems somewhat better. i guess it really is stages of acceptance for me. but i do wish that people in my life understood it not for the sympathy issue but so that when i dont feel well i dont get looked at as being lazy or overexaggerating that type of thing.
What I have found to be the easiest way to explain was from a youtube site with a neurosurgeon said the gpn is like having your 9th cranial nerve against your carotid artery and with every beat of the heart it slams the nerve over and over again! people seem to understand this explanation!
kathleencord said:
What I have found to be the easiest way to explain was from a youtube site with a neurosurgeon said the gpn is like having your 9th cranial nerve against your carotid artery and with every beat of the heart it slams the nerve over and over again! people seem to understand this explanation!
lo go youtube! that seems to be a good way to describe it!
Hi Chrisa,
Easy to see with everyones reply to your post that you’ve touched a common nerve. It’s a lonely condition sometimes. I have some guy friends who just piss me of so much with their lack of compassion if I’m not up for whatever they want to do. Luckily my family physician has been super supportive from the beginning. I have to say that I’ve got a couple of diagrams and brief articles that I’ve posted above my desk at work and carry around with me in my wallet. I hate trying to explain the GPN to people and trying to convince them of how difficult it is to live with, so I often just let them read a little on it. Usually the response is “wow”. Whereas when I try to explain it myself, I just see quizzical looking faces that are trying manufacture that look that says “sure, I believe you”, like you would to a delusional person that’s about to go postal unless you agree with them.
It’s definitely nice to meet you people on here though.
We should do a camp for adults with GPN like they do for little kids with various serious conditions, so they can be with other kids going through the same thing. Actually, maybe a Bahama resort instead of a camp.
Take care,
Ron
Ron K said:
Hi Chrisa,
Easy to see with everyones reply to your post that you've touched a common nerve. It's a lonely condition sometimes. I have some guy friends who just piss me of so much with their lack of compassion if I'm not up for whatever they want to do. Luckily my family physician has been super supportive from the beginning. I have to say that I've got a couple of diagrams and brief articles that I've posted above my desk at work and carry around with me in my wallet. I hate trying to explain the GPN to people and trying to convince them of how difficult it is to live with, so I often just let them read a little on it. Usually the response is "wow". Whereas when I try to explain it myself, I just see quizzical looking faces that are trying manufacture that look that says "sure, I believe you", like you would to a delusional person that's about to go postal unless you agree with them.
It's definitely nice to meet you people on here though.
We should do a camp for adults with GPN like they do for little kids with various serious conditions, so they can be with other kids going through the same thing. Actually, maybe a Bahama resort instead of a camp.
Take care,
Ron
hey i am all up for the bahama resort! lol but wow a camp that would be cool! i had hoped there was a support group that met around this area but that is when i really learned how rare it is! when i asked me doctor if he had any other GPN patients so i could give them this website and he said no only you i was like wow. that is a good idea though to carry something around in your wallet. i think that i have the more atypical GPN after reading peoples stories on here. so in a way i think it is easier to hide in a sense. so people are always surprised when i tell them .but i think the more people that come together the better it is. i let my doctor know about this group so he knows that i know what the deal is when i go to see him lol
I’m also so glad to have found this site. It is nice to have support. My mom and step dad who I’m living with temporarily are very understanding and both have actually done research on GPN so that the can understand it better. I have difficulty speaking because it hurts so, my Mom goes to my appointments with me and is my voice. I however, get frustrated with where I live, I live in Douglas, Arizona and there is crap for medical care here so every one goes to Tucson which is over 2 hours away. I moved here from a large metro area in Michigan and never had trouble getting into a specialist pretty quickly. I have had my flare up now for over 2 weeks and have been to my general doctor and she put me on Morphine until I can get into my new Neurologist. This neurologist called me on Friday and I have been trying to return their call since and they never call back, SO FRUSTRATING!!! I need to get in and get this pain under control but they don’t seem to understand enough to call back!! I would call another neuro but there are no other neuros in this area to call. I also have trouble with some of my friends, I am in the medical field (I’m a laid off Paramedic) and they still don’t seem to get it, they seem to think I should be able to take a Tylenol and it’ll be all better or it’s just going to go away. We were all recently in Vegas when this flare up started and I did my best to enjoy our time but, I seriously think they were all starting to get frustrated with me by the last day because they were short with me and didn’t seem to want to be around me. 
I wish more people understood this disorder, it is SO frustrating…I agree that we should have a camp or the Bahamas!!! 
Thanks all of you for being my support
Michele,
I read your post and I realize it is an old one. But it touched my heart so very much. It was de ja vu. I have suffered since 2000 with Bells Palsy, Heimfacial Spasms and Tirgeminal Nueralgia. I have had 3 MVD'S and my occiptal nerve cut. My Occiptal was compressed during the first surgery. I now have GPN and all the above plus still suffer with Occiptal Nueralgia. In March of 2011 I had a Scalenotomy (scaling down of the tendons in my neck) from a Doctor in Little Rock, AR. It helped for a while but now it is worse than ever. I am a single grandparent and I work full time. That is getting very hard. I had my surgeriesin Pittsburgh PA. I have gone thru my saving and would not go back to the same doctors anyway. My family doctor does NOT give me pain meds. I am on cymbalta 90mg a day. I take hydros, somma or valium when it gets too much to bear. I have considered drastic measures but know I have got to keep going on. I wish people would understand just how much pain we are all in. Yes I look normal... but the pain somedays are horrible. I have no voice, can barley talk. The pain...........
SO HAPPY WE CAN VENT ON THESE SIGHTS !!! LOL
HAVE A GREAT DAY
thedreamermary
Michele Squeo said:
Hi,
Your message really touched me. I've been suffering with GN for over 10 years now, and the lack of validation from others has been nearly as difficult to deal with as the illness. I'm a single mom, and my workload is more than enough for several full time people... making it through the day is often a herculean task, yet everyone looks at me like I am just the same as them. Even when I try to say I'm suffering - which I rarely do around most people - it simply gets dismissed, like they think it's a run of the mill headache or sore throat or something. I just want to scream at the top of my lungs, and tell someone the truth of what I'm going through. My boss had breast cancer. She was diagnosed and had surgery. Cancer is a terrible disease, and I'd never want to suffer it, but the only treatment she underwent was a surgery, and then she went on with her life... yet day after day, someone comments on her strength for surviving. Meantime, I have to find a way to survive horrific pain and suffering without any knowledge of how it can get better, and no one seems to care. It really does make it all so much worse. The lack of social awareness. The lack of understanding and support. The feeling of being alone in your suffering. It's like, because no one knows what it is, it simply does not exist. I have found very little support and understanding in family, friends, or doctors. The only one who knows really anything of what I'm going through is my daughter, who tries to ignore it because it scares her to see me like that. I guess that's the most valuable thing about websites like this... We all know the truth. We know the fear and the pain, and the hopelessness that can come. And we know the strength that it takes to endure. We need to support one another, so that we know there's at least someone out there who gets it, and reminds us that we aren't alone.
I have to say that this is exactly what I was trying to get at with my question about meds making you feel wierd or stupid. I'm a very bright person - I work as a Sr. HR Generalist at a large company. But these medications are killing me at work! Sometimes I can't even think of what I want to say! How embarrassing is that when you are in a room full of people trying to give a presentation...or how about a "strike" when you are in the middle of talking to the CEO of your company?
They see those occasional break-through pains that we can't hide that cross our faces - but don't know, realize, or understand that it strikes all day, the jaw aches all day, it hurts to swallow, the ice pick is still jabbing (although the meds keep it to a dull roar for the most part), the cheek hurts and the sinus pressure at times only serve to remind me that the "monster is circling". And of course let's not foregt the migraines I get now that are so horrible.
I'm so tired of people asking me "what's wrong?". Sometimes I feel like yelling at them my face hurts how many times do I have to tell you??!!!!
You people here seem real and I know if we saw each other one look would tell us the other is in pain. We just know.
I could have written this and almost had the exact words. I feel the same way. I do have family and friends that ask me everyday how my day has been with the pain. I push through it too. Sometimes at work, I have to put my head down and hold my ears. This is a terrible thing that we are going through. The latest problem I have been having is while driving or riding in a car, I can hardly keep my eyes open. I also have moments of pain that feels like a band is burning around my head. When it hits, I practically pass out. If I am at home. I will sit back on the couch and go straight to sleep. When I am driving, I pray that God will let me make it to my destination. I am coping with the pain better lately. I understand your concerns. I hate to seem like a drama queen but sometimes I have to talk about it to people just so they know what I am dealing with. It has definately changed me.
I'm so sorry Denise. All I can say is I know. I know what it's like. And until it is experienced first hand I don't think anyone else could possibly know what this illness, (disease, disorder whatever they want to call it), does to you and how it changes your life.
I know my family and friends care...they really do. But because they don't see us 100% of the day they can't understand what the fight is like on some days. My co-workers are fabulous - mostly because they see me in pain the most and have experienced my "medicated stupidness" (as I like to call it) first hand. You can share with me (us) anytime. We all need to "vent" and talk about how much this hurts us.
Because you are right - this has definitely changed us.