The Magnificent Migraine Community

Searching for a meme or pertinent photo about #MHAM on Facebook a few minutes ago to use for this post, I happened upon my own status update from last year, sharing a link to the AMHA blog and stating “a little frustrating that more migraine sufferers aren’t participating in #MHAM.” Ironically, I am writing this entry because a fellow blogger checked in on me, offering extremely kind words of support on my very sad last post of over a month ago, because this year I haven’t been participating, and she was worried (thank you, Skylar). 

The migraine community is a beautiful thing. Most of us haven’t met in person, but we support each other like family. Better than family in many cases. Most of us are chronic (of the bloggers I know best, anyway) and the more frequent migraines become, the more stigma there is, meaning a lot of sufferers don’t actually get support from their own friends and family. It can be incredibly isolating. Since I can no longer work and am on Disability, I am quite lonely and have particularly felt lonely this past month. And I am even one of the lucky ones with a supportive partner, caring extended family, and a few very good, kind friends. 

Since our beloved almost four year old (and 60 pound) collie mix rescue, Asia, accidentally killed our adorable new baby kitten Onyx right in front of me, a horrifying, devastating incident which I could have prevented, I have felt a little broken. Due to the CGRP study, I believe my migraines are better than they have been any time in the past five years. But lately I haven’t been able to express myself well, or do anything more than what is absolutely required.  And, in the open label phase of the study, I seem to be getting all the other symptoms of migraine without severe (or even moderate) pain, which is still debilitating as well as being confusing. Right before we went on our short, whirlwind vacation on June 15, I ended up in the ER, twice, with the weirdest migraine I’ve ever had – I vomited first. Before the severe pain but after two weeks of fatigue, vertigo, phono/photophobia, nausea, allodynia, brain fog, and irritability. I threw up and still wasn’t sure what was going on and then two hours later I was at an 8, and the ER cocktail didn’t work except for about an hour of level 5 pain rather than 9. My second visit the doctor wanted to admit me, which is rare these days and I would have jumped at the chance (my last admit was in 2012) except I would have missed X in her musical, as well as my  pain management appointment right before our trip. But the doctor took my suggestion of another dose of pain meds and a prescription for imitrex injections, which I was out of with no refills, and I did break the headache on my own at home. So doing much better than recent years? Still no picnic.

Undeniably though I am improved this year over last year, when I hadn’t yet met my wonderful pain specialist and had just had the worst headache of my entire life which caused me to get an unofficial secondary diagnosis of cluster headaches and an oxygen machine, but no narcotics, which are controversial but DO work for me (every migraineur is different, which my neurologist refused to admit). And yet last year I published a blog post for Migraine Awareness Month every single day.

So that is why Skylar was worried. And I have no explanation for my silence. I feel like I’m in an emotional cage or a deep well. The walls are high and impossible to climb. I give to my daughters but have very little left for anything else. I’m better, but I’m not. If it’s not one thing, it’s another. And I’m tired.

Yes, Migraine Awareness Month is an opportunity for us in the migraine community to be heard, like I stated last year. And I’m so glad I still have that community around me, even though, hopefully only temporarily, my own voice has gone quiet.

  

  

  

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8 thoughts on “The Magnificent Migraine Community

  1. So happy to see this post from you! 🙂 It’s good to hear your voice again. I’m glad to hear that you’re having some success with your treatment. Well it’s beddy by in my part of the world so good night and take care. 🙂 xxxooo

  2. Teri, you’re a force to be reckoned with in this community, and I thank you for all you do. Isn’t it interesting that as you’ve been feeling a little better, at the same time you’ve also been finding it hard to get past/over/through the wall around you? I’ve also been a little better in the last weeks, which should leave me feeling better, buoyant even, but it doesn’t. It scares me. Experience tells me it won’t last, and I should make the most of every better moment, but I can’t. I suppose it’s fear, or maybe not wanting to ‘jinx” this reprieve. But I think it’s okay to have periods when you feel tired or exhausted. I think that every day with chronic pain/chronic migraine is a battle, and we need periods like this to regroup, drink some water, find some encouragement, and then get unceremoniously shoved back out to the real world. Thanks Teri, you make a difference in my life. 🌺🌼 Linda

    • Oh no, Linda, I TOTALLY see how you were confused, because in my photo I’d linked the AHMA blog with Teri’s picture, but I’m Elizabeth Roberts-Zibbel, a MUCH less active and experienced advocate than Teri Robert. You are quite right that she is a force to be reckoned with and she’s made an impact on my life as well! As for your other comments, I absolutely agree. Every time I begin to do better I just worry about it, exactly like you said. Thank you for your kind words even though they sort of weren’t meant for me and again I am very sorry about the confusion! ~elizabeth

      • In fact Linda, I have now edited my post to remove Teri’s picture, and added a photo of my sad doggie, so as not to mislead anyone else about my identity. I really do appreciate your insightful comments. It’s nice to know I’m not the only one who freaks out upon a little improvement instead of simply feeling grateful for the reprieve! ❤️💜❤️

  3. I too for the first time have not been actively involved in migraine awareness month except for a few posts more about emotions than migraine. I found a new trigger which has significantly decreased my pain. Coming out of the pain I have found trouble dealing with life right now since I was so isolated from society. I just wanted to tell you that I understand the struggle. I wish I had a magic answer. I just take it one day at a time and have many do overs. ❤

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