Well, here goes. I am new to this website -- but not to the world of atypical trigeminal neuralgia. My pain, however, is not in my jaw, face, head, ear, or neck. MY pain is deep within my heart. You see, I am the mother of a 33 year-old mentally challenged young woman who has been suffering with atypical trigeminal neuralgia for almost a decade. We went through the typical trips to the doctor (must bre an ear infection) to the ear-nose-throat specialist (must be sinus-related) to the dentist (surely it is an abcessed tooth) to the dental surgeon (maybe there is jawbone involvement), to the chiorpractor (must need realignment) to the psychologist (has to be psychosomatic), to a neurologist (could we be looking at a tumor?) -- finally a diagnosis. SUCCESS -- we can take care of this now -- we know what it is we will fix it and she will be oaky. THEN you read and read and read about this dreadful condition and you find that there IS no "fix" -- there are procedures to try (two MVD's) but they don't always work, neurostimulator (SOME relief -- but the batteries need to bre replaced each year -- 4 surgeries in 4 years) and finally a neurostimulator that has a battery with an 8-year rechargable life. THAT's where she is now. Oh how I wish I could say she is zipping around pain-free.
No, my daughter still has periods of disabling pain. She attends an adult program center five days a week and lives at home with me. She loves to shop, loves to be on facebook, and loves to browse e-bay. But on the days where the pain is overwhelming, she curls up on the couch and doesn't even face the TV. My girl has the mental age of about 7. She has the faith of a 7-year old -- she believes in God and KNOWS that he hears her prayer--but how can't comprehend why his answer is more pain? I wish there was a way for me to help her. I wish I could take away this pain. She has so much of her life taken away -- no driving, no career, no husband, no babies, no home of her own -- and then there is this.
We lost her dad to a lung disease when she was just 15. It breaks my heart when she cries and says she just wants to get a gun and shoot herself and be with her dad. I didn't seriously worry about suicide, though, until she found out from somewhere that you don't have a gun -- pills can do it too. I hold her and tell her that I would miss her and I need her -- but she hurts so badly.
Can ANYONE offer me advice. This time of the year is usually one of her worst times and this year is no different.
I'm so sorry to hear your story. You're obviously hurting quite badly, watching your daughter in so much pain. My mom doesn't live with me, so she doesn't see me every day and only has some idea of what I go though. But I worry about my partner that I live with. I can see the affect my pain is having on him. Like you two, he went with me to every appointment, the same doctors and specialties you tried, for the nine moths or longer it took me to get a doctor that could help me. I worry about him all the time, knowing that seeing me in pain and being so helpless is quite difficult for him.
So, I'm going to tell y0u, as I always tell him, just being there is all the advice you need. If it means just sitting in the room together in silence, or perhaps you're watching tv just sitting next to your daughter, that helps. Being held in the arms of someone you love, that's the best pain medicine. It may sound cliche, but I assure you it's true. You are doing all you can.
I'm worried about you. The pain this is causing you is no joke, and I hope that you're seeing a therapist, or at least considering it. My partner has just started therapy, and I hope it helps. Some say it's even harder on the caregiver, and as much physical pain as I feel, I would never trade places with him. The pain in the heart hurts just as much.
Please try and find your inner strength and know that you are doing all you can. You are taking care of your daughter. Please take care of yourself too.
I can relate to what you are feeling! My 16 year old daughter was diagnosed in July of this year after having a horrible ear infection. She also has mild cerebral palsy and some emotional/psychological issues.
She was also treated as it being "all in her head" or "related to the emotional issues", until the MRI showed a very clear compression of her nerve. She is now on a very high dose of Tegretal and Baclofen and just wants to sleep all day. She has missed five weeks of school and is now getting tutoring at home. The feeling of utter helplessness is sometimes overwhelming for me. I think "I'm her Mom! I'm supposed to help make it all better!" She hates to see me cry so I hide that as much as possible from her. I, also believe that God will continue to lead us on this path.
In the beginning she would look at me and say "At least it's not cancer or something like that, Mom." Now, she talks about her lack of any sort of life and I worry. I have her in counseling to deal with the depression that is going along with this horrible illness and I just try to take advantage of the pain-free moments, whenever we get them. Whether it's playing a quick game, or coloring/painting a picture, try to fill those moments with "good stuff". Then as I help her through the next episode of pain, I call on those good moments to try to distract her. I then also talk about future good moments and try to plan what we can do next. It may not sound like much, but in my head, that's about all I can do for her, and she claims it does help a little.
I wish you and your daughter many pain free moments ahead!