Living with Chronic Migraines: Seeking Community and Support

I am a Migraine Veteran, as I’ve had this disease all of my life. It runs deep in my family. I’ve been disabled since I was 24 from migraine, and I’m 27 now. I see a wonderful famous migraine specialist. Im down to one last option to try for treatment - which is Vyepti. Having chronic intractable migraine is so hard to treat. Im not really here for any info or questions, as I’m really knowledgeable about this disease. Im here to maybe make some friends and find people like myself to converse with. This disease can be so lonely & isolating. Being disabled has been extremely challenging. If any of you are disabled, what kinds of things do you do daily? (When you are feeling up to it of course).

Your answer

Sandia721

2y ago

Hello, i also experience daily migraines as well as chronic pain from RA and fibro. Im still in the process of getting disability but just heard some good news from my lawyer the other day that implies it should be going my way. I definitely struggle with being lonely/isolated. I try and call friends when possible. It’s hard because a lot of them are working and have lives throughout the day. But I do have one other friend who is disabled and we’ve been talking a lot lately so if you have another disabled friend who is more available during the day then try and spend time talking to them. I watch a lotttt of tv though that can get old fast. And I also love to craft. But that one is super dependent on my pain and fatigue levels for the day.

LovelyLyra

2y ago

I’m sorry to hear you suffer as I do. It’s very challenging. That’s great that you do actually friends that you can speak to and go to. I actually don’t have any friends. We moved to a different area where I don’t physically know anyone, and I’m always alone at home most of the time. I haven’t had actual friends in about 4 years. It’s been hard to make friends. I don’t know anyone else who is disabled, or has Migraine in person. I talk to people I know online sometimes, but it does really take a toll when I don’t have anyone as a friend in real life.

pigglybandit

2y ago

I apologize if this is a bit personal but are you on disability for chronic migraines and if so how did you get it approved? I've tried so many times and I keep getting denied (and migraines are only one of many chronic conditions that I live with every day).

LovelyLyra

2y ago

It was a very easy process for me fortunately, and I know it’s usually extremely difficult for others with migraine to get approved. I was approved 1 year after applying. I was initially denied 2 months after applying, then I hired a well known lawyer to appeal it. He filed the appeal paperwork, & then months later I was sent a letter from SSDI saying they decided to revise my case and they approved me. I never had to go to court or fight it. My lawyer was shocked, saying he’s never seen a case like that ever. I suppose it’s likely b/c I have records dating back to 2006, & I was literally from every job I ever had (which was countless) since I was 14 due to migraines. I could never hold a job. I’ve also dedicated my life to trying every single treatment out there, literally every single medication. Plus alternative treatments. I saw migraine specialists out of state, and have spent countless days in the ER/hospital due to my migraines. Migraine is a spectrum disease, and I am on the severe side of the spectrum, as I have migraines every day (chronic intractable migraine). I think they approved me b/c it just wasn’t a case they could fight, all of the proof was there. It’s the only condition I have listed as a disability as well. I’m so sorry that your experience is different. Maybe you need more documentation, or a better lawyer? I always saw people say in migraine groups on FB when talking about SSDI - to always answer the questions as if you are experiencing your worst day. Be as descriptive as you can.

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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