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Living With Facial Pain

My husband thinks I have a fake disease


#41

I’m so grateful for the support. It really helps me pull through when I’m feeling down. Thank you everyone for making me strong again. As for my husband, I think he has less empathy because he’s a fireman. He went to one of my Neuro appointments and practically interrogated the doctor. I think he knows the disease is real but is in denial. He won’t read a book. He says he’s too busy. I do have a great family that support this disease. But I still feel alone. It’s nice to talk to people that have actually felt the pain of this disease. People who know how horrific it is. I feel one little pain and start to panic wondering what’s coming next. I think of all of you as angels helping me through. Tears of much felt love and support are streaming down my face. Thank you, thank you so much.


#42

I completely understand your feelings. Believe me I do…I have other health issues and lately I just feel like there’s no more room to pile anything more than what I’m already dealing with. I really don’t have any support from my husband. I can no longer work or do the things I want to do. I feel completely isolated as happens often with this disease people become tired of our misery and pain. But knowing your husband; the person who’s supposed to love you through sickness and health doesn’t understand is absolutely devastating. I’ve also had family members treat me like I’m just a head case. The sad thing is that we tend to become more and more isolated. I thank God for the support I find here. My husband at this point may speak 10-20 words a day to me. I feel like I have become almost numb at times. I just can’t find the answers. I have found that adopting a dog has helped me immensely. They give you unconditional love, they love you no matter what. I’m sorry and sad for what you’re going thru. I will keep you in my prayers. But it helps to know when you come here you are not alone. Never forget that!! YOU ARE NOT ALONE!


#43

Crissy

we have virtually all of us ...been there at some stage or another...how can we go from someone without TN to someone with it....that changes us forever....well we cant....It is very hard for spouses....family...friends to watch this personality change that occurs...thats not to say they are right.....far from it...but....after hating everyone for not understanding....I decided it was too much effort and took up too much of my time to even worry about it....I had enough to worry about just getting abut my daily life....and holding together my business...so cruel as it sounds I just didnt say anything to any of them anymore...I just stopped giving them my time....How can someone who dosnt have this monster understand...to be honest Im not sure even I could because of the constant pain....day in day out...drugs...more drugs...then drugs to compensate the effects of the original drugs....the list goes on....The best thing to do is explain to your husband how you feel....then get him on this group and force him to read some of the stories on here....Maybe then he will begin to understand the horror of what this disease can do to you....and frankly...if he cant....then hes not worth bothering with....It will take all your strength to fight this....you do not need anyone in your life who is not 100% with you...This is for life...there isnt a cure....just controlling it via drugs that make you feel spaced...Like you this has had an impact on every aspect of my life....but you have to sink or swim..and swimming is the only option left....Iv wished that for just 30 mins some of my family could have this...then they would shut up ....Iv had all what you have had....the " pull yourself together...its only a headache....proberly Migrane ""....7 years down the line I am used to it....but now I do my own thing...If I feel bad....I dont say anythign...just go to bed ...take more morphine...not the answer...but better than having to justify myself and my pain to anyone....take care hun.....and dont be bullied...we all understand exactly what you are going through...and this is why this fantastic site is here...so we know we are with fellow sufferers who understand this illness and know exactly how we feel....xxxxxx


#44

Suffered Long Enough, would you tell me a little more about this "nerve fix". I'm interested in hearing about it.


#45

Maybe I can forward you some pictures of my surgical scar. Show them to your husband and then ask him if he still thinks this is "fake". I know that sounds harsh but knowing what we all go through on a daily basis it infurates me when someone thinks we're faking. Just because you can't see what is wrong doesn't mean there isn't something wrong! For a while my husband would say "It's all in your head" as a way to try to distract me from the pain. His intentions were good, but really, my face feels like there is electric fire shooting through it and there are times I prayed for the sweet relief of death. While yes, physically, it WAS all in my head this is one thing that mind over matter just didn't work for. It's hard for people who have no frame of reference to understand what this is like and unfortunately that's just how it is. It's another reason for us to be strong and try to push through the days. Hopefully you can get some relief whether it be from meds or surgery and this will just become a distant memory.


#46

Crizzy the fact your husband intergated the doctor shows he cares. People especially men may show they care in very peculiar unhelpful ways but they do care they are in a very difficult position as they feel helpless. To sit and watch your loved one in so much pain must so difficult. Red who helps runs this site is one such husband. xx


#47

Jimmy NO NO NO NO NO...Please please...do nothing to your nerve.....A Neurosurgeon severed mine 2 years ago...Please believe me when I tell you he made it worse....I was left with AD....which is even worse than the ATN he was trying to cure...Back home in Spain....the NS down here said under no circumstances should the nerve be touched in any way except through a MVD....It is too late for me....AD is never curable....so any hope I ever had of having MVD and a pain free life has been taken away....To add to the injury ATN has come back....so both together..well.....I need say no more...whatever you are going through with TN...ATN...trust me it is no where near as bad as AD...which you never have a hope of getting rid off....


#48

Carol I think your reply was to my comment inquiring about "nerve fix". The "nerve fix" someone was referring to on here is merely a cream you rub on your face. Its not a surgical procedure. Be aware, I will nerve let them cut the nerve. A neuro told me once that would leave "phantom pains". I wouldn't think of having anyone cut the nerve.


#49

I am not a doctor or a natural healer but I have been to countless doctors .dentists clinics in the past fourteen years ever since "the failed root canals and open jaw bone surgeries" nerve fix" is a natural medicine directions say take three a day and fallow doctors instuctions I can not guarantee a cure but this product "leveled off " the jaw and brain problem but can be resistant unless all "mercury fillings and dental screw ups have been removed> I was MRI ed by Akron Ohio Centers of Nuero and spine doctors and was told to perform MVD surgery or gamma Knife but they told me that "we do not want to kill you perfoming the surgery so back to square one


#50

the medication I used was pill form from vitamin world not used extensively


#51

Crissy... i have some idea which may help. last march i became exceptionally ill with this disease. i sought out a pain management group. i was allowed to get fentanyl patches. i use a 50 patch. i have few side effects and the most pain relief. mayo clinic also gave me fentanyl suckers. they take effect within 8 minutes and are the fastest pain relief. you just place them in the cheek of the good side of the mouth. my world is completely changing with this medication. it helps take away the fear of leaving the house. this medication is meant for people like us. -ann


#52

Ann - Fentanyl is an extremely potent narcotic..in fact it is 100 times more potent than morphine. How are you still able to drive?


#53

HI, my husband started acting the same way in the begining, my pain started when we went on vacation to Florida, which we were dreaming about for a year. As soon when the plain landed I started feeling the horrible pain in my face. That was scary, I told my husband about it he started screaming at me, he thought I am playing a joke ok something, well, that just was horrible. Three years down the road he still does not believe me.


#54

Crissy, I thought I read somewhere in your posts that you have had tmj or jaw surgery. You are a very young beautiful woman. I had tmj surgery when I was 29 and now at 53 I now suffer from ATN and atypical GN. I had over 20 years of remission and have been dealing with this for 2 years again. The GN is new. I just saw my neuro for botox and he does my neck and goes into my scalp also and I have gotten some relief from the ear problems. I do understand what you are going through, all of us on this site understand the disease that you can't see. My son responded the same 2 years ago when this facial flared up again. I have had 13 plus surgeries, cervical 3, lumbar 7, thoracic 3 and have failed back surgery, walk with cane, look crippled, lost over 3 inches and that one shows but still when someone asks how I am doing it doesn't matter what I say, most assume if I am up and walking I am pain free...not a chance! My neuro and I just discussed the fact that the tmj joint is 1 mm away from the TN nerve and yes one aggravates the other. I think my ATN and GN were caused by my tmj problems. My neuro and I agreed, no surgery, meds, whatever works, tried the cream but no results. I am just happy to be able to get some partial relief.

When I saw your pic you remind of my daughter who is 31, and she looks a lot like I did when I was a young woman. It doesn't help even though I had jaw surgery, no one sees the pain, they see a beautiful woman when they look at you and you do not get validated. I have been suffering from chronic pain for so long now I no longer have anxiety over family validating my pain. Sometimes I simply say, "I am fine" or "today is not a very good day" and nothing else is said. As hard as it is to move along with your day, your husband, mine passed away 7 years ago, needs you to be his companion. If you show him how strong you are when you can overcome it and try to enjoy some time together then when you do hit an 8 out 10 on the pain scale he will see it and understand. You are grieving over the loss of your good health and he is grieving over the loss of his companion in life. I did everything I could do raising 2 children being a mother and also being a wife in every way expected from me. You will feel rewarded when you overcome this horrible pain, don't let it control you, you can control it. Now though I have to admit being alone I only have to care for myself, I do help out with my grandchildren sometimes, but I can go to a quiet place which is my bed.

Let me know if I have this right, you did have some type of surgery for your jaw?? Take care, Sharon


#55

granny, this is beautifully written - very encouraging to any of us - thanks


#56

I feel your pain. I am in remission now. I struggled in pain from March to August. Finally relief with Acupuncture and Chinese herbs. They just don't get it.Could not work, everyday was a struggle. The only RX I take is Gabapentin 100mg once a day. Still go to acupuncture once a month now. Hang in there.


#57

Susan Memoli, how much does the acupuncture treatments cost? How often? Is there an end to which you won't have to keep going back? Where did they place the needles and approximately how many?


#58

My wife has this horrible disease takes a beautiful person and just compete destroys them. Most people don’t understand this disease since they don’t see a broken bone sticking out your face or some kind of symptom its not real they just don’t understand stay strong we r here if u need us


#59

Crissy, I am beyond sorry you aren't getting the proper emotional support from your husband. I read that you think he is in denial. It is difficult for our loved ones to see us in this much pain/to accept this. As a firefighter he seems like the person who wants to quickly fix things (sorry to choose something obvious) and it is probably frustrating for him that he can't easily help you. I know it seems like you are alone, but we are always here to listen to you and to support you. We are in this together!!! Always remember that. You are NOT alone. Hugs!


#60

My husband thought I was overstating my pain in the beginning. then he did his own research. Now I dont have to explain anything, I just have to let him know when an attack is starting. He is the most supportive and understanding person now that he has the knowlege. ask him to do the research.