Options for younger adult (37) with Trigeminal Neuralgia seeking at home assistance? - AgingCare.com

Options for younger adult (37) with Trigeminal Neuralgia seeking at home assistance?

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Hi. I am new to this site and looking for information in the face of my ever challenging and debilitating, painful disorder called Trigeminal Neuralgia. I have type 2, TN2. I live in North Central WA State and hoping to find help with assistance for mostly "light duty" things at home and transportation. Are there really options out there for someone of my age? I do not have much in the way of a support system as my family, friends, and medical community does not seem to understand (or have much compassion) or sensitivity towards what has now turned into a long battle with a chronic condition. It's too the point where I am struggling and failing with many daily functions. I feel I am whittling away. I am no longer able to work due to my condition but HELP IS SO HARD TO FIND AND SO HARD TO ASK FOR! Especially in my neck of the woods. I've been trying to obtain a patient advocate for nearly a year. But so far, this healthcare system has failed me miserably... In all regards. I am still in so much pain and despite a firm medical diagnosis, people still think I'm DRUG SEEKING! I have unbearable pain and major sleep deprivation. Need help just trying to find help. Desperately need help coordinating care. It's a full-time job! Need help in my search for a doctor that will help me in my quest for a resolution and maybe in the meantime, have mercy on me during this time period until I figure out if risky surgery is right for me. Or, if there are other medications that may help besides all the poisons they kept trying make me take that did not help (such as Tegrital amongst a host of others) that only made me sick. Neurosurgeon says that my type of TRigeminal Neuralgia, TN2, is hard to treat with the typical, standard medications or surgery usually used for TN so he wants me to wait and weigh it out and hope for a miracle or alternative resolution. Meanwhile, I am in horrible, horrible pain and losing my life. I am trying so hard but I am often too pained and sleep-deprived to enjoy life. I barely eat anymore because it's become too much of a bother at times and often triggers painful attacks. I force myself sometimes because I know I need proper nutrition and energy. I LOVE healththy eating (fresh veggies are my fave food)... But like many things, preparing food, making messes and cleaning up have come to be more than just putting in a little effort. Easy tasks have become difficult.

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LostinPain, I found a Gamma Knife radiation provider in Tacoma,Washington. It is SouthSound Gamma Knife at St. Joseph's. Please check them out. They may be able to help you! Keep us updated, please. Good Luck!!!
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Last year my 87 year old mother who had suffered from Trigeminal Neuralgia for a few years and had taken the generic for Tegretol started having frequent attacks of worsening Trigeminal Neuralgia pain. My sister researched what other treatments might benefit our mother. At Tufts Medical Center, there is a group of physicians who perform Gamma Knife radiation. My sister contacted them. My Mom's doctor was Dr. Wu. Within a few weeks Mom had the procedure performed and she was pain free within a few weeks. So far so good! No relapses!!! We are very lucky to live an hour away from Boston, MA and all the great physicians & hospitals there. I understand there is a NY hospital that does this procedure. Perhaps there is one close to you. Good Luck!
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LostinPain, I know you are not imagining or drug seeking. I imagine any medical person who knows you have TN would know you are in terrible pain. I have heard that it is about the most painful condition there is. Do you belong to a TN support group. There is one online support group at .livingwithtn.org. I hope the mods leave this link up long enough for you to see it. It may be that people who are going through the same thing would be able to coach you on things that you can do and where there may be some help and hope.

I wish we could make the pain go away. I hope there is some way. Maybe the TN group will have some answers for you.
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See if you can find an acupuncturist who has previously treated patients with TN. A very good acupuncturist should be able to help you with the pain. My personal preference for an acupuncturist is a practitioner who is either Asian or has trained in Asia but that's just my preference.
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