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  • Becky Fox posted an update 3 weeks, 4 days ago

    Hi all, Kelly and I are still with you. We have had a couple of family misfortunes in the past month. So about pain management. When Kelly was 13 and just prior to coming home from one of her hospitalizations, she began to develop headaches. We just thought it was an isolated incident that some Tylenol would take care of in no time. But no. Days, weeks, months and years later she was plagued by debilitating pain that only ibuprofen seemed to dispel. Her CF doctors were aware of the problem, and arranged for her to see an ENT doctor about a year after the headaches first started. She was advised to just keep talking the ibuprofen. Mind you, Kelly took the ibuprofen every single day, sometimes 2 times a day , 4 200 mg pills at a time. Every single day till at the age of 40 (minus a week) she began her regimen with Trikafta. One day soon after she noticed she didn’t need any ibuprofen that day. And the next day, and the next day. Along with the other differences Trikafta made in her life, she was able to add one more; no more headaches!! Even surgery in early 2009 for sinus polyps didn’t have much effect on the headaches for long (I honestly can’t remember if the surgery had any effect to tell you the truth). Now the only time she needs ibuprofen is for period cramps. She has marveled at the fact that those are the only times she needs pain medication.

    • Becky, this is incredible! Trikafta has lessened my joint pain and overall body discomfort, but I still get those dang sinus headaches (darn it). I can’t help but wonder what the cause of Kelly’s headaches was. CF does such strange things to our bodies! It’s fascinating to me that Trikafta has had this effect for her. Thanks so much for sharing!

      Also, I hope that you family is doing okay. I’m sorry to hear that things have been difficult. Thanks again for this update.

        • Thanks Jenny, things are a little better. We had one death and were anticipating another one. But so far the second one hasn’t happened. In fact after being told that the person only had 2 or 3 days to live, she started getting better and better. She is still in the hospital though and will most likely live out the rest of her life in a nursing home. But the good news is she is 90 years old and still with us. It’s strange that you still get the headaches, but good the joint pain has lessened. Do the headaches affect your day to day life? Do you take pain reliving medication for them? Bye for now.
            • My sinuses have been my biggest issue for the last several years. I have especially persistent sinus disease, which is the cause of my headaches (usually). When it gets to the point that the headaches are affecting me daily, that usually means it’s time for surgery. I sometimes take OTC pain meds like Excedrin or Tylenol. I also treat with heat or ice packs, depending on the type/severity of pain.

              I hope you and your family are doing okay. Talk soon!

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