Decline Posted January 4, 2010 Author Report Share Posted January 4, 2010 wow, as I'm sitting here feeling sorry for myself because "it's so cold", your post hit home I am so very sorry for the extreme pain and frustration you are experiencing friend, and remember well how very hard it can be to "get out from under" though any real pain that I have experienced has been temporary - with an end in sight - it did not diminish the "moments" where the agony seemed to have no endsome people have enjoyed considerable pain relief with accupuncture, reiki and other less than western methodsfor what it's worth, I wish you love and light and freedom from this somehowThank you very much for your sympathy and your kind words of encouragement. I have tried accupuncture, reiki, meditation, traditional chinese herbal medicine and combinations of eastern and western medicines. Unfortunately haven't seen any positive results yet. Link to comment Share on other sites More sharing options...
Dan56 Posted January 4, 2010 Report Share Posted January 4, 2010 My neurosurgeon says that considering the nature of my trigeminal nueralgia I have at least a 50% chance of developing anesthesia dolorosa. Instead of pain episodes, it would be non-stop and never ending for the rest of my life. As it stands, any episode that lasts longer than three hours makes me feel like I am losing sanity. Thank you very much for the suggestion though. Assuming that gamma knife radio surgery deadens the nerve, I wonder how anesthesia dolorosa could be a result from having GKRS? A second opinion might help? If your condition worsens and it gets unbearable, I think I'd consider GKRS as a treatment. Since surgery and medications didn't help, it just seems that killing the nerve which causes the pain would be a logical step. But of course the risks are yours to weigh. God's speed. Link to comment Share on other sites More sharing options...
grateful Posted January 5, 2010 Report Share Posted January 5, 2010 again, I'm so sorry and I wish you strength, friendI know you've considered this from every angle and have gone to great lengths to change the course of your illness by every means available to you; I read of your experiences with both surgery and drug therapythe only other suggestion that I have is an entirely unprofessional and uninvited one do yoga(use drugs if you have to, to start)focus entirely on the mind/body connection - that is, your own power and accessing it (despite the pain)you've been feeling recently that it's just not worth it- a doctor told me once "how could you be feeling "good"? you're in physical pain, and as long as you are, you can't feel well otherwise.." stay, it's worth it BTW yoga has gotten me through some horrific times, despite my own pain I just wonder, if you found the perfect scenario, if it couldn't help you (that scenario might be part of a treatment plan, depending on your insurance,if you want it to be; alternative therapies are not the bugaboo they once were vis a vis the medical community) or it could be sun salutations and stretching in your living room with mindfulnesstomorrow, when I practice, I will remember you, and wish you back to your power and a modicum of pain free days, at least to start! Link to comment Share on other sites More sharing options...
BrDevon Posted January 5, 2010 Report Share Posted January 5, 2010 One thing I used to say when I worked at a suicide hotline (and I use this advise myself):There is at least one person on this earth whose life you need to make a living hell. Find that person and live to do it.My supervisor used to cringe every time I would take the conversation there, but I often had people call me the next day and tell me they survived the night if only because they hadn't found the person to get even with.Remember, I care. I have migraines for at least one week a month, often they run 10 to 13 days on an attack, and have had them for the last 30 years. People have learned that if they see tears in my eyes and I'm not at a funeral, they had best run away. When I get to about day 4, I am no longer a sane person. Not to compare my pain to yours, just to say I understand debilitating pain. Keep fighting. I pray one day we will find the cures to these things that cripple us. Let's live for that day. Link to comment Share on other sites More sharing options...
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