IMPORTANT: please do not use this as a place to vent or give advice (believe me I have tried anything you’re thinking of)
I was diagnosed with chronic migraines in 2020, there had been a lot going on before this too, but they got significantly worse after some long-term traumatic events in 2022-2023. Migraines run in my dads side of the family, but not nearly as severe as mine- we suspect I was already going to develop them but that they were made worse by PTSD.
Chronic migraines are diagnosed when a person has at least 15 headache days per month, with at least 8 of those being migraines, for over 3 months. I have had an average of 20+ migraines every month with headaches every day for over 5 years. I am either in severe pain, or exhausted and ill from days/weeks/months of that. I can NOT live a normal life, and there should absolutely be more accommodations for migraine sufferers.
The only thing that currently helps me is (occasionally) a big dose of sumatriptan. I have been on countless preventative medications including pills, monthly at-home injections, devices like cefaly, and even botox (50 injections in my face/head/neck/shoulders every few months wasn’t very fun). I have tried many lifestyle and diet changes, physical therapy, you name it. Nothing has worked.
Another thing is, migraines aren’t always just extreme pain, they can make you dizzy and nauseous and many migraine sufferers (I’m one of them) have auras that affect vision. My auras are usually sparkles, black/blind spots or blurriness, but some people get pretty crazy ones. I have to think way too much about what everything I read/hear means and usually can’t even figure out words for what I want to say either. Yet there are almost no accommodations at school or work or in general for people with migraines, and the stigma is insane.
Though even the pain alone makes me severely depressed and feel like I’m losing my mind, a lot of emotional pain comes with it too. I used to be able to do things I probably will never be able to do again. I will not be able to work the “ideal” job properly. A lot of people make me feel like i’m overreacting or a burden because it affects my mood and energy levels. There is no cure.
I am currently working with my doctors (and ways to save money) to get a service dog for this illness (along with other things)... I do have a GoFundMe though I am NOT expecting donations, but shares or anything is much appreciated. Link. Okay humiliation ritual over
I want to add some sources for you guys to read if you want to learn more, but I’ve yet to find any that aren’t huge research papers. You are more than welcome to recommend some!
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Páramo
I was actually just about to ask you how you got your diagnosis. I've experienced migraines at different points in my life, but I imagine my experience can't really be compared to yours.
I hope you don't mind me asking, but how do you manage your work life while living with a chronic illness? And how can a service dog help with your condition?
Are you seeing a psychologist as well? Living with a chronic illness often involves grieving the loss of the life you had before, so having mental health support can be really important.
I'm sending you a big hug ☹💖, and I truly, truly hope your situation improves in the future.
Hi! Thank you for the questions.
I got my diagnosis after being referred to a neurologist, and for me it was pretty straightforward just because of the severity. I know that "migraine" itself is a diagnosis given to people with <14 migraines per month, or people who are just more susceptible to migraines without having the chronic illness- if that fits you more, you could talk to a doctor about it!
I am unfortunately not seeing a psychologist. I can't afford one at the moment and I am on medicaid which does not cover any around me. I know it would help me immensely, but for now I am just trying to get by with what I've learned from hospitalizations and previous therapy experiences.
I'm extremely lucky to have a job that is understanding of my situation, but it is still not very flexible. Most of the time I'm just forced to deal with my migraines, but they are good about letting me stay home if it's really debilitating. I have a device that makes them more bearable while I have it on, but it definitely doesn't take them away (maybe takes them down 20-30% in intensity)
As for how a service dog would help, half of the reason I would be getting one is psychological, which would indirectly help with my migraines as that is my biggest trigger. Though I'm not exactly comfortable sharing all my diagnoses and that is necessary to explaining how it would specifically help </3. My neurologist is the one who recommended a service dog for migraines initially, and some of the tasks he mentioned were alerting oncoming migraines (very helpful for me to take preventative medications in time, because I cannot tell at all), item retrieval, guidance, balance/stability, deep pressure therapy, alerting other people, and behavior interruption.
Thank you so much for your well-wishes :)
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