A few months ago I posted a blog describing “migraine type I” (The Slow Build). My goal is to create a little mini series breaking down (some) migraine categories. I deeply believe that explaining how migraine can vary dramatically on an individual level is an important part of helping to increase awareness and understanding of this disease. Every person living with migraine presents with symptoms and pain as unique as a fingerprint; and all too often assumptions are made that everyone’s experience mirrors what someone’s aunt, cousin, roommate, brother, or mom is going through. So, in an effort to widen perspective on the many faces of migraine, let me introduce you to migraine type number II: the liiiiiingeeergraiiiinnne.
These lingerers can be particularly draining and also confusing. For me, the lingergraine usually starts off as a severe and acute spiked migraine attack; one where pain is at the top of my scale. I take my abortive triptan (often a double dose over 8 hours), am forced to #shutitdown and retreat to my bedroom with icepacks and blackout shades pulled tight as I breathe and wait for things to lighten up.
The beginning of this migraine type isn’t particularly notable in any way. My abortive medication + time + patience generally gets things under control within 4-8 hours, at which point I’m left in the foggy aftermath of such an attack.
At this point, head pain is still present, but de-escalated to a level that is manageable; one that isn’t as all consuming as just a few hours before. I have a little more energy and enough mental clarity to shower, listen to an audiobook, get up to refill my water bottle or make a cup of tea.
But sometimes, this post-intense migraine pain lingers longer than normal, like an ominous cloud over my head, while I move about and try to push forward from the initial onset of pain. This heavy cloud, (shrouded in the threatening knowledge that the attack has not fully lifted, and holding the very real possibility of re-escalating pain) is what I have come to define as the lingergraine.
It’s a delicate walking of a tight rope where you try to “get back into normal activity” but haven’t had even an hour of a lift back to “baseline” (I use this term very loosely in chronic migraine land) after a bad attack. Living with chronic migraine, this baseline is fluid and changing, but for me, there is usually a point…if only for a few hours…where my pain seems to stabilize. Unfortunately, with a lingergraine, that moment is incredibly elusive and often hides in the shadows.
For me, a lingergraine has an unpredictable timeline; as if it has set a course whose details I am not privy to. It limits my activity level significantly and doesn’t seem to abide by the few patterns that my symptoms typically follow. The lingergraine rollercoaster is taxing and exhausting, both physically and psychologically. It leaves me constantly questioning whether I should use another round of abortive medication, if I am doing something to keep it from lifting or whether “x” activity will tip the scales back into severe pain.
When I experience a lingergraine, in between severe pain spikes; people will ask, “are you feeling better?” — and I’ll have truly no idea how to answer. Because even though I might be feeling “better” than a few hours ago when I couldn’t get out of bed, I know that the pain is still there, ready to be kicked up by just the smallest trigger. I try to stay present, but it is difficult when migraine pain is percolating behind my eyes and the storm is still hanging above; ready to drop some lighting and a torrential downpour without any warning.
I experience lingergraines for days or weeks (these are particularly hard stretches) at a time. Chronic migraine pain fluctuates frequently, shifting day by day, or even hour by hour. But through these ups and downs, there is usually a point where the lingergraine breaks.
It’s different every time — maybe I’m able to get through a whole day with low pain and not need meds, go to an appointment without my pain kicking up majorly or comfortably walk Finn without being pained by the noise and brightness of the outside world. What makes a lingergraine tolerable for me is knowing that it simply cannot last forever; that the pain can and will break, always.
I’d love to hear if you experience this type of migraine attack and any names you’ve come up for it. Sending buckets of strength, love and courage to each and every one of you!
I share each step along my road to wellness and healing and hope that in doing so I can inspire you along your own path. Thank you so much for being here.
Yes, this is exactly how I’ve been living for the past 3 years! It’s been a difficult adjustment, for me and my parents who’ve been supporting me. As I keep working with my neurologist, I’ve been trying to get on disability to lessen the stress of this completely disabling stage of migraine disease, as well as the stress and burden for my family. It’s difficult to maintain a positive attitude, but thank heaven for social media to keep some kind of connection with family and friends.
Debbie
I am SO glad I found young blog. I have been experiencing chronic migraine attacks for several years, lasting 72+ hours multiple times a month. It’s comforting knowing there are people out there (you ) who are STRONG and determined to live a beautiful life, no matter the circumstance. <3