Vyepti infusion and dreading Christmas
I had my first Ivy Vydpti infusion yesterday on day 38 of the most severe migraine (NDPH) attack I’ve ever had. My consultant put me on Atogepant but that just took the edge off (pressure and throbbing) and took me from pain level severe 10 down to 5/7 and still a lot of discomfort. Whilst I wasn’t expecting to wake up this morning and be pain-free just the thoughts of Christmas coming I’m now literally dreading. I’m usually like Mrs Claus planning decorating and looking forward to everyone spending it with us. Family are coming home from abroad & I love them more than anything I’m hoping it’ll give me a bit of a lift, but I’ll be honest with you all here there are days now when I just feel like I want to go to sleep and not wake up. The thoughts of continuing days like this when everyone around me is celebrating is heartbreaking. Anyone else dreading Christmas because they won’t be able to enjoy?
Here in Ireland doctors are very conservative in what they prescribe and I checked with the pharmacy today and I can continue taking Atogepant whilst on the IV infusion but I’m wondering what others might take at times like these to through a holiday period…?
I am SO glad to read your post. I'm not feeling so alone anymore about dreading Christmas. I won't tell any of my family because that would not be nice. But all the work involved with having our three grown children and grandchildren Christmas Eve is too much to think about. I wish I could wake up and have it be January 2.
This time of year can be so overwhelming. You're not alone in feeling this way. It's hard when we don't want to disappoint family members. The thing is if we don't take care of ourselves we won't be able to be there for the family.
Please keep us posted on how you make out this holiday season and I'm sending you wishes for a low pain day, Nancy Harris Bonk, Patient Leader/Moderator (team member)
Hi
Thank you for sharing your thoughts with us. This time of year can be particularly difficult for those living with chronic illness. Trying to get all the things done we feel should be done take a lot out of us, it does for me.
I'm trying very hard to pace myself, but find it difficult. If I'm having a good day I tend to overdo. Which of course leaves me feeling crappy for a few days and I'm back to square one, feeling crappy. Such a viscous cycle.
As far as how I manage this busy time of year I try to manage stress, stay hydrated, try not to skip meals and keep a regular sleep schedule. The thing about migraine disease is we can be the perfect patient and still get attacks. It seems to be the nature of migraine disease.
I'm sure others will be along soon to share their stories with you. In the meantime I'm sending you wishes for a wonderful holiday season and hoping it's with little pain, Nancy Harris Bonk, Patient Leader/Moderator (team member)Thanks Nancy I really appreciate your kind message, pacing myself will be key, today has been a little better.
You're very welcome! We're here to support you in any way we can! Pain free wishes, Nancy Harris Bonk, Patient Leader/Moderator (team member)
