How do I make my life less miserable? Existing with Chronic Migraine
How do I make my life less miserable?
I have been existing, not living, with chronic almost daily migraine. It is me and my cat in a tiny condo (and all that living in a charming old buildng brings). I might go outside 3-4 times each month due to migraines and pain. I am not on a preventative nor do I use devices due to adverse reactions. I am not able to afford acupuncture, etc. I have one medication that I ration and for the most part stops the pain. I do all of the standard self-care as well as therapy, meditation, music, TV, special tea that brings comfort, recognizing the good moments ...and where would I be without my fur baby cat. And there is still so much suffering and misery.
It would be so helpful to hear what others do to physically, mentally, and emotionally feel less miserable.
With gratitude,
Jenn
Hi
- Thank you so much for posting this invitation for others to give their thoughts and insights on the topic of how to manage life with migraine. You bring up a very real part of chronic migraine- when our lives start feeling like we are living on a postage stamp- (this may resonate with you and offers the idea of seeking a change in routine): https://migraine.com/living-migraine/pushing-through-limitations. Indeed, I have to remind myself to change things up in the small ways that I can handle. In the swamp life of migraine, we can't help but feel felled at times by a low or depressed mood. To loosen these oppressive feelings, I push myself out of my hovel and careful routines to see the world, connect with friends and family - sometimes knowing that doing so will result in an attack. I have tested the waters enough during my multi-decade life with daily chronic migraine to know that, despite all the careful steps I take to avoid it, almost every day will result in an attack one way or another. So, if I'm going to get one regardless of my actions, it can help to remind myself to live a little. Doing so, even in the smallest ways, can replenish my empty reserves and give me some perspective that helps me continue along on my postage stamp. I'm not sure what this would mean for you- but for me, it means taking my pup for walks in new places- along rivers and meadows - sometimes with friends or family in tow.
Additionally, it takes a concerted effort at seeking and feeling gratitude in my life. For example, I'm grateful that, even though I was sidelined from a career I loved, I am so glad I don't "have" to go to a job every day - and that I am released from the pressure that can come with it. For me, living with chronic migraine means having to be spontaneous - jumping into life when the pain is low enough for me to engage. Making plans rarely works - and the endless cancellations break my spirit due to the apologies I feel compelled to offer those I am letting down. It also is about making a concerted effort to let myself off the proverbial hook of blame that we are so easily ensnared by during a migraine life. For me it also helps to focus on my pup- all she gives me- the beauty of her- the sensation of her fur in my fingers that so comforts me while I'm struggling. And today, my small way to stretch myself out of my routine means bringing my computer out to my screened porch with quiet peaceful music playing in the background while I write to you.
All the small ways, the big ways, and everything in between. I also find such comfort in connecting with our community here- to be reminded on a daily basis that I'm not alone in this challenge. And, when I can't get myself to look up and out, I know that it's time to reach out to my therapist for a tune up.
It sounds like you do have some wonderful self-care techniques that you employ. Are you seeing a migraine specialist vs. a gp or a neurologist? There are over 100 different therapies (preventative and rescue) that are now available to help treat migraine. It might be worth revisiting your options in case there is something out there that can help decrease the severity or frequency of your condition. I realize that's easier said than done as so many treatments are pricey and come with side effects that rival the migraine attack itself. Please give us some of your load by sharing and connecting - we are here for you and in this with you. I look forward to reading what others have to share on this front. Most warmly- Holly migraine.com team.
I have had chronic mig's for 50 yrs in the last 7 or so yrs they are truly ramping up. I stay in bed with an ice pack on my forehead most days; that in itself is hard to state because I literally can't stand it anymore. I can't read, I listen to music on YouTube, I stay in my dark room on a bed that needs replacing but I can't aford to replace it. I'm 77 so I don't worry about that aspect...mayhaps I won't be here in this pain much longer...
I won't give in bloody things. I won't mention the name. I am so tired of them I have really thought of playing in the traffic or...not to worry I cannot give up this life. It means too much to me but boy or boy if I could, I would be so gone on the Lord's side if he would have me. LOL
As for the neck pains I do something called Isometrics on the neck thus my name 'neckometrics.' One side and one corner at a time: Press on the forehead for ten seconds (one or two hands), the back for ten, the right side for ten, and the left side for ten. Once you are comfortable with that start on front, back and sides, then the corners for ten. Then when you are comfortable doing both at ten seconds go for twenty. I would not go for thirty, you could do more damage then be helpful. This works every time for me.
These daily mig's are hurtful for me and I take anything and everything since my neuro told me I can't do anything for you, I am letting you go as a patient, but there is nothing I can do for you we have literally tried everything, there is nothing else to try...What a long journey with migraine. Hate to hear the attacks have worsened in the last number of years. What do you attribute that ramp up to? I've had them for 47 years and am noticing a change as well - wondering if it's related to menopause.
The neckometrics sounds fascinating- I'm grateful you shared this. i think those of us who live in fairly constant migraine pain can't help but have necks that are out of whack. I wake up at night sometimes to the sensation that I'm digging my fingers or thumb deep into my neck. Unbeknownst to me, I must be seeking relief. It sort of hurts so good. I'm sure you know the feeling. There's one knot I have that I can't seem to ever release. I have botox every 10 weeks primarily into my neck and without it I'd be paralyzed in pain. Have you ever tried botox for your neck issues?
Ice is a daily strategy for me as well. There was an interesting discussion as a result of how to keep ice packs cold last week on the site. I wonder if you happened upon it: https://migraine.com/living-migraine/keeping-ice-packs-cold.
I lost a couple of neurologists in the same way you described- throwing up their hands in frustration. It's awful to be on the receiving end of this. But truly, I think that is more about them than us. Migraine is incurable so migraine specialists have to grow comfortable in helping patients manage their pain rather than solve it. They're in the wrong field if they can't handle this reality.
Migraine asks so much of us- and it IS about managing- navigating each day and each moment. Your description of the darkened room, the youtube, the ice pack- that picture is one to which so many of us can relate. It does help me to remember I'm not alone in my darkened room, "watching" youtube with my eyes covered by an ice pack. To remember you're there too- and so many others- doing our best. And connecting here when we can. Sending love, compassion, and warmth your way. Holly - migraine.com team
- this hits close to my heart. Every day I struggle with this very problem. I saw my life taking a different direction, but here I am mostly indoors, under low light, with less noise, a very controlled environment, so as to manage my days with migraines - feeling as if I have been existing and ... not really living. I feel as if I am watching my days go by and waiting ... My SIL mentioned to me recently, as she has an extremely limiting chronic illness and just retired, that she is having a very difficult time adapting to this very different kind of life, nothing daily to do or having a plan, and that she is just squandering through her days, out of view.
I think it is very important we continue to have our dreams and goals and move toward them daily, even if it's just a day trip, a new adventure, or a new activity. It may take a different path to achieve, but reaching out and grabbing the things that give us joy is invaluable. What are some goals or joys you have missed or wish you continued to pursue? What are some ways you, as someone suffering from migraine, can get there? There may be modifications, but keep striving ... for new ideas, different perspectives, greater understanding, clearer insight, joy, and miracles. How can you do this? Could you possibly help someone in your community, volunteer, or find an activity that you have been putting off? Participate in a community yoga or meditation class for an hour. These things have helped empty my days of monotonous and defeating thoughts and bring some light back. Thinking of you. I hope others chime in and offer their views. Warmly - Rebecca (community moderator)Hi Rebecca! Thanks so much for thinking of me. Wow - what a boook review. After the first paragraph I thought, I'll pick this up. Then the gut punch and knowing now I NEED to get this book - “this too shall pass.” But what happens when “this” never goes away?” I feel this strange combination of screaming, sighing, being angry and then deflated and then because I am having a good day (and it was 60 and sunny in Boston!!!) I said okay to that strange combo and now let's get back to the present moment and cherish this feeling of little pain - I can be so rational when I feel good 😀 Thank you again for thinking of me and sharing this book with me. I hope you are as well as possible.
With gratitude,
JennHi Jenn! I've never heard of this resource either and would be interested to learn if it's helpful for you. I hope today continues as a low/no pain day for you! 60 and sunny in Boston in November!?! Wow. Sending love. Holly migraine.com team
Ohhhh my I don't feel so alone in this migraine world !!!! I thought I was the only person suffering from chronic migraines !!!! The last 2 months have been absolutely hell I haven't experienced anything like that in my life I have experience chronic migraines but nothing like the last 2 months !!!!!!!!
I finally found this forum to see what I would find I also live in a small condo and just got a new baby kitten but honestly thought that was a mistake but honestly she makes me laugh so much !!!! I focus on the joys and laughter and not so much on the pain.I went through 3 months of migraines and couldn't really remember the months of August and September I had maybe 6 good days from both months as I keep a daily log of migraines for my neurologist when I see her. Come October they started to lessen. I had just gotten a small kitten in September I don't even remember taking care of her I had to surrender her it wasn't fair to her because there were days I couldn't get out of bed many days. I cried for 4 months after that. My daughter and her husband had to come over and throw trash away get my mail etc. I feel for you I'm so sorry.
I did a lot of crying but decided I needed to figure out what was happening. Some meds I can take are just too expensive for me. I had a nerve block down in my neck that went horribly wrong I can't even describe what happened but it was frightening I have a 3 disc fusion in my neck that has been redone
Nice to hear from you again,
Thank you so much for joining the conversation and sharing your support with us. Having a support network is so important.
How are you feeling these days? Sending out pain free wishes, Nancy Harris Bonk, Patient Leader/Moderator Migraine.com Team Member
I would love to share a photo of her I didn't know you could share pictures on this site that's awesome
In case you need help posting a picture, you can see the button on the bottom right of the comment box when you write a reply. It says "upload image." You can only include one picture per comment, and one of our staff members needs to approve it before it appears. We usually get to it within a day or two, but if we don't, please feel free to poke us! 😀 Let us know if you need any help! -Melissa, migraine team
