Caring for people with migraines

Hi Pamela - Thanks for sharing here. Sounds like you and your family have a pretty extensive history/experience with migraine. "The House of Pain" sounds like a pretty fitting nickname, unfortunately. Living with migraine can be so tough and hearing that it's not just you in your house with migraine...that must be really difficult. As far as coping -- there's so much to consider and not really a one-size-fits-all approach, as I'm sure you know. I'd be curious to hear what you've tried. There's also lots of people who have shared what's worked for them throughout the site. Here's one forum that might be helpful to check out: https://migraine.com/forums/coping-tools. But again, I'd be curious to hear more about your experience and what's helped or not helped you and your family.

- Jake (Team Member)

Hi Jake, the thing that helped my son out the most was bio-feedback. He learned from one of the original practitioners and it probably saved his life. He can slow his heart rate down and knows how to, as he describes it, "swaddle" himself so that he can be with other people. But only for a short while. He always has migraines. He is 28 now and has had them since 7th grade. As far as my husband goes, he has cluster headaches and the only thing that helps is oxygen. He sucks down a ton of it. Other things we have tried for migraine: botox, remeron for depression, ketamin, and various pain reducers, non of which worked. So I am on team bio-feedback. It is not woo woo as some people assume. It gives some control back to the patient and is based on good science. Hope that helps, Pamela

Hi, Pamela! Welcome. 😀 Glad you are here with us. It can be really tough to navigate migraine from the position of a caregiver (I am assuming from the way I'm reading your messages that your son and husband have headache disorders but you don't). They are lucky to have an educated and supportive advocate in their corner, for sure!

For the record, we absolutely believe you about biofeedback. Everyone is different in what helps them, and we know that remedies can run the gamut from pharmaceuticals to essential oils and meditation. A while back, one of our patient leaders did some work with biofeedback and wrote about those experiences. I can't put my hands on the article I was thinking of right now, but here is one from Tom that does mention biofeedback:

https://migraine.com/living-migraine/manage-fluctuating-symptoms


And we also have some people who have shared the incredible pain of cluster headache here as well. I am SO RELIEVED to hear your husband has access to oxygen. It seems like a lot of people have trouble getting it for various reasons. Does he use a non-rebreather mask with it? Our cluster headache members have often mentioned how important that is:

https://migraine.com/living-migraine/abort-cluster-headaches-oxygen


We are here to support you, and your family is welcome to drop in too if they want! Take care of yourself and thanks for sharing a little bit of your experience with us. -Melissa, team member

Hi Pamela,

I suffer from migraines every day. I relate to your son because I don't remember ever not having migraines, just like my Mom. I wanted to share an experience I just had with my daughter, who really doesn't ever remember a time I was well.

I had asked for some water, and she came in with the water and her growly face. She slid down the side of my bed and said she felt like a butler instead of a daughter. And that my husband doesn't feel validated either.

I took a little time to get my words in order. I told her how much I loved them and needed them care. I asked her what would happen if I was left alone, and she didn't want to see me hurting more.

I also vowed to recognize their help more. Remind them that I loved them and how important their care was to me. I also decided to try to do more things with them, from watching tv/movie or playing cards.

I thought if we each could take a step to show the other how much they are valued, then maybe we would both feel better. I promise you laying in bed all day in pain isn't fun, so having that conversation with my daughter/caregiver would help both of us feel more connected instead of being chained to our job/condition.

I hope this helps a little. Good luck!