Hi, Sarah—
It was hard for me when the pain began on the left side. Although, the right side had harsh electrical shocks and the stabbing pain in the ear, the left side was minute nerve action, not really pain. My MRI showed a vein on the left Trigeminal nerve and nothing on the right. MS was ruled out along with other things that could be causing the pain. In the last few years, and more so in the last few months, the left side is becoming "louder" with pain. Also, I'm experiencing migraine on this side more now than on the right. The TN pain began for me in 2002 with a 3 day migraine. And, as I look back in my history, there were migraines prior to TN along with sinus infections/pain. I'm wondering if the onset was much earlier than 2002, but was slight? Migraine pain is so close to TN it's not funny. But there are parts of the nerve involved in TN that are not in migraine, so in this way it is different. They are equally debilitating and if it were not for medication to keep the pain in check and lessen it a few degrees, I'd be a basket case.
Since TN came to visit our home ten years ago (March 23), our marriage and friendship has been severely tested. I will say that we are best friends and did not realize that by NOT talking about the HEART struggles of TN and trying to carry on with "all things as normal," had NOT benefited us in any way. We found individualized supplement support as well as counseling as needed to be a BIG part of our growing through this process. Both people in a marriage (as well as family) go through a sort of grieving process and need time and space to move from denial to that of acceptance. For me it took 9 yrs+ mo. to get to the acceptance stage fully and completely. Even though this stage has been internalized, I still go back to grieving over the loss this disease brings. When this happens, crying is a good thing. Whenever life is reduced to 50% or less of what we are used to + in the prime of our lives, it is a significant loss.
Our greatest job on this earth, I believe, is to be good to ourselves (first) and then to others. I used to believe the other way around, but now I see it is I who needs the oxygen mask before I give one to my children. To be good to myself, I cannot speak on a daily basis about my pain level or if it is hurting right now. If I do, I will spiral downward into a depression type day. I've opened up to my family/friends (when the pain was low), saying that I love to laugh/smile/basically enjoy every moment. I'd rather see things and think of things in a positive light, while not ignoring the negative aspects of life completely, I just can't live there. I've shared with them that if I am not smiling and am on the couch with a heating pad on my face, then I am not doing well. What I need from them at this moment is for them to manage life as if I were taking a nap or not able to talk with them. This has sparked more responsibility in my kids, and more assertiveness in my husband. My hubby talks to the kids prior to going out to work for 12 hours, and explains they need to help me in whatever I ask them to do. They have become very good pinch-hitters. Plus, compassion has been birthed in them and it is a beautiful sight to behold.
Trust me when I say that just because we have health challenges and are faced with things we never, ever thought would happen in our prime, we CAN and WILL move right through this fire and come out on the other side better than when we entered. Your hubby sounds like a loving man and one that adores you :-) How often does that happen in life? Trust him with your heart's concerns and let him share the load in a way that benefits both of you. It's well worth the effort, but may have to be done when your pain is lower and you can talk with a clear mind.