Tingeling, my heart hurts for you. I understand the deep fear of thinking that we may have unknowingly passed on a defect to our children. I love my girls more than I've ever loved any thing else in my life.Â
My girls are ages 16 and 12. I've protected them as much as possible from seeing me suffer. I didn't know it at the time, but my oldest saw me with about a level 9 last year. We were watching tv and I suddenly excused myself so I could go to my room. Sudden exits are a common thing for me as I've had clusters ever since they were born. I try to pretend nothing is wrong, but, you are right, they do KNOW. This was a particularly bad attack and I couldn't handle being confined to my bedroom so I went outside to dance. After 20 minutes of pacing barefoot in the rain and mud with an 02 bottle, praying, screaming, cussing, begging, crying, pulling out my hair, and clutching my eye it finally ended. I snuck back into my room, pulled myself back together the best I could, and then joined my girls again watching tv as if nothing had happened. That evening, my oldest daughter confronted me. She had watched me through the blinds when I had my attack. She felt horrified and helpless but she did not regret what she saw. She's now my biggest supporter - my sitter when I dose. My youngest hasn't seen as much, or know exactly what I take for a treatment - I've just told her it's an experimental medicine that makes me loopy. She's my other sitter.Â
During one of my recent "breakdowns" - I sobbed uncontrollably while expressing to them that I would never forgive myself if I passed this curse on to them. I literally pray to God and beg him to spare my children from this. They sat beside me, looked me the eye, held my hand and lovingly told me that never, ever should I feel that way because it is not my fault. Deep inside, I know that, but it warmed my heart heart to hear them say it. My girls are my heroes.Â
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I hope you find a doctor to help your daughter. My oldest started having severe headaches at age 5 - crying, screaming, anger, throwing up, no sleep. They did an MRI and it came back okay. She has frequent migraines which are aggravated by allergies and barometric pressure changes. I hate that I cannot take them away. But I can help her cope, just like she helps me cope. For me, part of coping is trying to see something positive in every situation I experience. Whether it's clusters and/or migraines, our pain has led us to discover our inner strength, develop empathy, and become very grateful.Â