Comforting me during my post-DHE/methysergide freakout was almost impossible. I refuted everything Hart said to try to soothe me. In wondering what might have comforted me then, I came up with the idea of a comfort plan. It’s more of a list, really, of things that might calm me down when I’m freaking out (or when I feel particularly bad during a migraine attack). Not everything on the list will work at all times, but it’s at least a guide when things feel out of control. It’s for me and also for Hart, since he’s the one who is usually with me when I need comfort.
I’d love to hear if any of you have something similar. If so, what’s on your list? Is a mental list or have you written it out? Have you shared it with others who could help you in times of physical or emotional crisis or is it for yourself?
Here’s mine.
My pet: If I had a pet, it would be second only to having Hart hold me. I bet this is a major reason people domesticated animals in the first place—to cuddle with a warm, soft, non-judgemental, non-talkative being in times of stress, a being who can lick your tears or purr until your heart swells.
Music: A couple days after the aforementioned freakout, I was in the car when my favorite acoustic Dave Matthews show came on. I relaxed immediately and wished I’d thought to turn it on that Sunday night. Then I thought better of it. Many of his lyrics are about living in the moment and seizing the day… exactly what I was lamenting being unable to do. As much comfort as his music provided me in my sickest years, I was often conflicted about my inability to live life to the fullest when I couldn’t even get dressed without resting. Maybe Dave wasn’t the answer. I considered other bands I love, including some afrobeat and funk. While both genres make me smile, they also make me dance, which would likely have added to the downward spiral I was in that night. I was left with a particular Bob Marley show and a certain Jack Johnson album, both of which Hart knows to put on when I say, “I want to listen to music I can chill out to.” I’d mention neither if you asked me my favorite bands, but both hit the spot when I’m stressed. And that’s the reason I took you through the details of my music-related musings: sometimes the music that would normally be your first choice might not be right for the moment.
Nature pictures: Being in nature would probably be ideal, but can be hard to come by in the middle of the city. I came across the power of nature pictures during a difficult phone therapy session. My therapist emailed me a list to look at and I left my computer open afterward. As I was crying, the screensaver of National Geographic pictures came up. My tension lessened immediately. This is something I think I’d have to seek myself. I doubt I’d respond positively if Hart said, “Hey, let’s look at your screensaver” when I was sobbing.
Nature sounds: If I were in nature, the ideal place would be watching (and listening to) a creek or river. That’s hard to come by in Phoenix, but audio of river sounds or rainstorms might be a great balm. I’ve actually never thought of this before. Next time I need comfort, I’ll cue up one of my Sleepmaker apps and let you know if it works.
A warm bath: Need I say more?
Splashing cold water on my face: This one’s less intuitive, but it’s a suggestion from my therapist who claims it takes you out of fight-or-flight mode. That would have been an excellent technique to remember on that horrible Sunday.
A dark room with white noise: This is my standard migraine setup, but Hart’s the one who thought of this during my recent freakout. It, plus Hart holding me, is ultimately what calmed me down
I’m really into this idea of individualized plans we can offer other people. At first it seems contrived to provide loved ones with lists like: things that are usually helpful for me during a migraine attack, ways to approach me when I’m showing signs of depression, how to soothe me when I’m beyond reason (all with the caveat that not all things will work at all times). But how can we expect others to know what we need if we don’t tell them? Sure, some people will pick up on certain things, but others’ perceptions of what you need may not actually be what would help in that situation.
Hart and I are celebrating our 17th wedding anniversary this week. He knows me well and has a lot of experience at this caregiving thing. Still, having a list of strategies to try to soothe me would have been really helpful that night. Because, honestly, he was barely holding it together himself. He had to take care of me at the same time he was also terrified that life as we’d come to know it had changed irrevocably. My needs took precedent because I’m the one who is sick, but, even as I was caught up in my own grief, I was thinking how unfair it is that he had to take care of me when his life was changing, too. Contrived or not, a guide would have been useful for both of us.
The only things that are at all soothing for me are:
a) lying on my husbands chest while he rubs my forehead (depending on whether or not I can handle touch). A doctor once explained to me that this was called entraining. My central nervous system eventually entrains and becomes more like his (calm) and sometimes this will allow me to fall asleep.
b) if I can make some suggestions on music, Bach Cello Suites and Bach Goldberg Variations. His music is so soothing and meditative, but again, as you all are very aware, it depends on the kind of migraine you are having, sometimes music is way too much.
c) my new favourite if I am having a 72-hour migraine which are quite common for me: origami. It takes about 10 minutes to learn, requires some focus, but if you are not great with meditation, as I am, this is an excellent replacement and achieves a similar result.
MZ, thanks for sharing and for teaching me a new term! I’ve already Googled entrainment and can’t wait to learn more. Origami sounds like a great option. I’m so glad it helps you.
Take care,
Kerrie
I love the idea of a list too!
Kerrie I am so sorry you are still having reactions to DHE/methysergide. Have you considered DNA testing for medications through a company such as Youscript? I know many EDSers have severe reactions like you or need more or less of a dose. So Youscript testing has determined what meds to take/avoid, the dosage, and the combined interactions.
As for my list, when my headache starts to get out of control the first thing I do is find a guided mindfulness exercise on youtube. I love the water sounds too. I don’t have any favorites, so I just search mindfulness waterfall or mindfulness ocean. Then I listen to a few options and start. I should have a few saved, but my headaches tend to affect my choices. If that makes any sense at all.
Warm baths with epsom salt also part of my plan too.
When I can get the worst part under control I will lie in bed with my two babies (my dogs – Boo Radley and Lucy) and watch a movie….anything good to distract the pain.
Sometimes I also use TENS on my neck and ICE the painful areas (but I have other headache types than migraine)
I wish I had husbands like you two!
Thank-you for the suggestions and hope these side effects go away soon. Sending you gentle <<>>.
Trish, thanks, I’m glad you like the idea. Fortunately, the DHE (and steroid) effects didn’t last too long, but I’m still not back to where I was in early June. I have been tested for drug responses. It’s strange, but if I have a reaction to a drug, it tends to be VERY strong the first time I take it, present but mild the second time, and gone by the third. Still, I doubt I’ll be trying steroids again!
Take care,
Kerrie
This is a much needed idea for me as I am in the throes of a particularly bad migraine episode. I realized I have a small mental list but few know anything that’s on it. My husband knows a few and always does his best but I think listing it out physically will not only help others help me, it will help me to know it is there so that I don’t have to spiral down so quickly. There’s help and hope in a comfort list. And I’m going to make one and make sure all my loved ones know where it is. I too love a bath, no lights, classical music, my dog( he was a rescue but he reacued me) and a favorite movie ( Sense and Sensibility ). Part of migraines that makes me depressed is the feeling of being alone and out of control. The comfort list is going to help me with both. Thank you so much for pointing out something so easily done but not given enough thought to.
Kristina, I’m sorry you need this right now, but am glad you find the idea helpful. It seems like such an obvious thing, but it never occurred to me until now. And the favorite movie is a great idea. I love Zoolander, which would be a great antidote to a bad mood.
Take care,
Kerrie