Posted 8/7/2012 2:42 AM (GMT 0)
So sorry to read of your story and situation. I don't even get regular headaches (common varities), so I can't even imagine what you are going through. You would think that with all our technology and medical advances, that they would be able to pinpoint what is the root cause behind all of this. Obviously there has to be a source of the pain, and there are only so many things it could be originating from.
Also sounds like anything and everything that could be tried has been tried, so I know that has to be majorly discouraging after all these years.
Not unless its some minute part of your brain constantly sending the wrong signals to some particular nerves or nerve bundles. Not that this is the same remotely, but I am dealing with perm. chronic pain due to severe nerve damage caused by faulty radiaton inconjunction with my advanced prostate cancer. My dr says, there is no way to isolate the particular nerves that were damaged, and outside of a true miracle (non medical) there is never going to be a fix or healing. Not real encouraging to me as the patient, but the reality I am having to adjust to in my life. Because of the relentless pain, I am a steady diet of fentanyl patches and Loratabs for pain. Have been dealing with this for over 2 years now, which is but a drop to your suffering.
Glad you found us here, we may not be able to provide you direct answer or direct help, but we are here to support you, encourage you, and let you know you are among friends, all familiar with severe chronic pain for various medical reasons.
If you ever need to vent, just to get it out of your system, feel free to do so. We all do from time to time, and it can help mentally, if nothing else.
I am dealing with a two-edge sword at this point in my life. I have an unstoppable cancer, all curative attempts have failed fast, and I am dealing with the cancer pain related to faulty treatments, yet saying that, I never give up. Life is still good, though painful at times.
So I end for now by saying, despite your horrific story and experience in the utter realms of pain, please, never, ever give up hope. You may feel that after 40 plus years of this that it will never get better, but you never know what tommorow, or the next month or the next year will bring. We can only hope that one day, sooner rather than later, that your pain source can be pin pointed, and the appropriate treatment or solution can be found for you. I would like to believe that on behalf of you.
Please stay with us, keep us up to date, and remember, you are among friends here.
David in S.C.