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Living With Facial Pain

My husband thinks I have a fake disease


#61

Dear Crissy

My heart is breaking reading what you are having to deal with from somebody who you chose to be your life partner. To share moments of sadness, happiness, pain and life experiences with. Why would he think that you would lie to him about having this awful affliction? Beggars Belief! A fireman too; somebody who has chosen a profession where he saves others!! May sound like I'm beating up on somebody whom I've never met, but I'm just going off what I'm reading.

Please remember EVERY day that YOU are not pathetic or fragile. You have Trigeminal Neuralgia, which has re-written your story for a while. You will find a medication/treatment that will help you to be able to function and get through your days. I don't know what you do for a job, but there are many online options which you could look at if you are unable to leave your home. Please try to stay positive, I know some days it can seem impossible and post on here often as there are many many others who are going through the same thing.
Much Love


#62

I’m now having anxiety attacks. I don’t know if it waiting for the pain to struck again or from me pleading my case of tn to my husband. How much more can one person take?


#63

I also suffer from panic attacks brought on by this disease More meds to control them.


#64

Hi Chrissie. I too started getting anxiety attacks from TN in the beginning. A friend gave me a great book to read - 'Don't feed the Monster'. It reads like a children's book and was first published in the early 90's, but is really good and the main thing I took from it was how to breathe properly; something we could all probably do better at. The breathing makes a big difference. I also had on hand 'Rescue Remedy' which is a natural product and you put a couple of drops on your tongue. I live in Australia, but I'm sure they would have something like in in the US.


#65

I need to try something bc I feel like I’m losing control of everything. This is just so much to take in. Another thing I’d love to ask, my right eye is drooping, can I stop this in any way? Maybe ice or tea bag? It’s becoming very noticeable and it’s freaking me out.


#66

Crissy, you need to see your neuro about this drooping eyelid. You may be having something else going on. I would google Bells Palsy although I am unsure how much of the muscles of the face are involved. I think you have pressure on some facial nerves and I hope this is reversible. This you can see which makes me more frustrated for you and the denial you are getting from your husband. Sharon


#67

Crissy, I did some Dr. Googling. Drooping eyelid can occur with TN or could also be the first symptom of Bell's Palsy. See your neuro. You may have a compression if this is true TN which you are being dx'd with. Take care, Sharon


#68

Maybe you could print off a description of TN that tells that it's one of the most severe pains a human can have. Or email it to him. I lived 20 years in a marriage where hubby thought I was faking, and his family were quite rude about it too. I was 1200 miles from my own family and had no support.. I was pretty close to leaving him when hetold me I was faking. (It was lupus.) I asked him if he wanted to stay married to me, I had to be ready to possibly hear "no", and the consequences it would bring, but he said yes, so I told him to come to one Dr. appt or one counselling session with me. He did both and his opinion changed somewhat. When I developed TN, he decided to leave after the third time I needed him to drive me to the E.R. I had always driven myself before with lupus, then came home and finished making dinner or whatever. I was devastated that he chose to leave, but later it got through to me that the stress of his uncaring and disbelief would have made my pain so much worse. He was just tired of paying medical bills and tired of living with a sick wife. I think you may be at the point of you deciding whether you can live with it or not. Try to get him informed through an email or a Dr. or counsellor visit. Someone said something very wise to me, but told me 10 years after i was divorced. He said the person who loves their partner the most, has the least power in the relationship. If we love our husband more than he loves us, we give in to his every whim and decision, even if we are sacrificing ourselves. If the husband loves the wife more than he wife loves him, same power struggle. The one most afraid to lose the marriage will be the one who suffers the most.


#69

Crissy you may have learned by now that your eyelid is Bell's palsy. My brother and father n law had it. It's an auto-immune disease (body attacking itself). If your husband can see your drooping eyelid, you'dthink he'd get a clue that something is wrong.


#70

http://invisibledisabilities.org/educate/butyoulookgood/

http://invisibledisabilities.org/coping-with-invisible-disabilities/relationships/a-love-thats-unbroken/

I like these articles. Thought of you Crissy so I am sharing with you and the others.
Hugs-Tree


#71

Sheila W., you have a long history of disease and a husband who no longer wanted to keep his vow, "in sickness or in health". My husband left me at 51, he had lost his companion, although I need to say he was there for me until then. One thing he said to me and it is true today because he died in '07 was "you might find it easier to just take care of yourself" and no longer cooking and doing all his laundry. I have never desired another companion in life and so all I can say about husbands is they go through a grieving process the same as we do losing our health, they are losing their companion in life so their feelings are justified. Sharon


#72

Hey Crissy,

Wow do I understand! I know exactly how you feel! My husband is the only one I have to help me with anything and it's so hard when he just doesn't understand or even seem to care about what I'm going through. I have gotten to the point that I hardly do anything with him except go to the doctor any more. Sometimes it is because I physically can't and sometimes I don't even want to! The last time we had to make a 3 hour trip to a specialist for me to try again to get some help I got to listen to how I just didn't understand how hard this was for him and how stressed out "he" was! I have no listen to this while I am having a severe pain attack and have nothing that will help! I have gotten to the point where I hate hunting and fishing and hiking and boating and swimming and all the things I used to enjoy doing with him. He still does them while I sit at home. I have no friends any more and even my family doesn't come to see me. I saw my parents 1 time in the past 6 weeks because they were riding around and thought of me. My daughter rarely comes and my brother never comes. I can't figure out if it's because they hate to hear about the pain or just hate to be around me!

It's Saturday night and I'm alone again (as always) with no one to talk to or care. I spent all night in the ER because one of the new meds they put me on caused a severe bladder and UTI. My husband took me but as soon as he got up he's been gone. Obviously worried about how I am doing right? I just feel alone all the time! I can't help what I can't control or how it controls my life! I'm also tired of trying to be strong, trying to smile when I'm in great pain and trying to go places when I hardly feel like moving.

I'm sorry to go on and on like this. I wish I could encourage you but I can tell you this-I do understand.

Hugs and love,

Wendy


#73

I completely understand. Go to a neurologist and request a brain and facial orbit. I had it done and the results clearly showed a loop in my brain squeezing the blood vessels. Scientific evidence tells all. Mayo Clinic in MN advised against any surgery. I’ve modified my lifestyle to avoid flare ups as much as possible. Diet and exercise are key. No caffeine, processed sugar, loud noise (couldn’t finish my MRI (noise from MRI was a killer) but were able to capture the loop) and stress…which is impossible but relaxation exercises help a lot and so does any exercise because it releases those endorphins that make you feel good. Diagnostics tell all.


#74

This is heartbreaking to read, but all too real. I think the only thing that comes close to the pain of these illnesses is the pain of so few believing it exists. When it’s your closest loved ones, it’s absolutely horrific.

I view people from a completely different lens after developing GPN. You see so many sides of people that aren’t visible to those without invisible illness. Why people are so prone to believing they know the pain of another person I will never understand. Even doctors. It’s incredibly irrational and cruel. There aren’t objective tests for pain.

I hope everyone here can find support in person from people willing to understand you.


#75

My wife became a believer after I took her with me to the Doctors visit and now she understands and now concern with my sickness.


#76

My name is Kelly…I was diagnosed with TN 8 months ago. My husband and my step kids just do not understand this and ignore most of my pleas. My husband gets frustrated with me when the pain hits because I am supposed to tell him when it’s coming. He says he hates that he has to deal with this to. He says that him and his kids get frustrated with me because they don’t know what to expect…Well I don’t know what to expect. I don’t know when or how or what is going to cause the pain. I have had to rearrange my whole life & when the pain hits I want to die…I’m 39 how am I supposed to live like this the rest of my life. This is a daily battle…a never ending battle…a life a don’ts …I try to do what I can now to make my life better for me…scared everyday of what might happen. I am on Prozac, Ativan & 600mg of Tegretol. I use an ice pack to freeze the nerve if the pain hits to hard. In hopes to make my husband understand better I have asked him to go to my Neurologist with me in November…Hoping that makes him understand.


#77

Just saw your topic about fake disease. I have had this reaction from several acquaintances, “medical professionals”, and friends. It intensifies the feeling of being alone.
Friends who act this way, I have moved back to being merely acquaintances. Relatives, that’s a bit harder. It must be so emotionally painful to get this from your husband. It has been awhile since this topic was posted, so maybe you two have resolved the problem by now. I hope so.
If not, try to get him to talk to one of your doctors, who can hopefully convince him that this is very real, and horrible.
There is a very sympathetic l video by the actor Tony Chalub and his wife about a friend who had TN. Maybe that would help.
I will pray for you. I hope that you are doing better.