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Has anyone needed/tried any particular home adaptations?

So a little bit of back story and explanation of my symptoms...

I had a car accident 4 years ago and hit my head which led to concussion and worsening headaches over the next few days leading to migraine.

Migraine runs in the family and I'd had about 4 or 5 a year since being about 12. They were getting worse before the accident but I assumed this was just because I worked in an special ed school.

However, my neuro believes the accident has exacerbated the previously episodic nature of my condition to now chronic at 26+ obvious migraine days a month (all around 3-7 days long) with prolonged aura and other debilitating symptoms, as well as the rest of the days being migraine without aura and a little less severe in pain intensity.

I have right sided weakness, almost constant nausea, regular vomiting, dizziness and visual disturbances with periods of blindness or reduced peripheral vision. I can lay in bed okay, which is what I do probably 80-90% of the time, but can't put my head back on an angle or lay in the bath due to the incline at the back without exacerbating the pain and other symptoms of the attack or generally just feeling an awful pull in my neck that feels like my head's being ripped away. I'm constantly fatigued because of the attacks and medication side effects (I take 100mg topiramate twice a day, zolmitriptan as an acute generally but I have sumatriptan injections which make my head feel like its burning from the inside out. But I'm having botox in March so I'm hopeful) so I walk with a stick, as well as brain fog, allodynia from my waist up and an awful memory.

I know a lot of these side effects are really common, but I struggle so much at home. I barely bathe because I cannot get in or out of my bath safely with how unsteady I am on my feet and eating's just as hard as getting out of bed. I'm miserable because I can't do anything for myself. If I could even just have 10 minutes of peace to myself in a shower it would be amazing but as it is I have help for everything. I'm appreciative of that, my mum is genuinely amazing, but I also feel so bad about it.

I feel like I'm not deserving of any help, like with getting a shower (I live in social housing and could not afford to put one in myself) because to so many people it's 'just migraines" even though I know how much I struggle.

Anyone else feel like this? Or had any adaptations done/bought any adaptations that have made their life easier or a little more manageable?

  1. Hi @Dottiexo,

    Thank you for reaching out and sharing your difficult journey with us. I understand how head trauma can trigger frequent migraine attacks, in addition to other debilitating symptoms, having been through this myself.

    As far as accommodations at home, I do wonder if a shower chair would be helpful, in addition to some grab bars? I have a shelf I can sit on in my shower I'm thankful, and do have a few areas I can hang onto when I get dizzy.

    I hope that is useful and I'm sure others will be along soon to share their story with you.

    Keep me posted?
    Nancy Harris Bonk, Patient Advocate/Moderator

    1. Dottie, you absolutely deserve a shower -- every single person, no matter how sick or tired, still deserves respect and care. It's okay to need help with daily living. It doesn't make you worthless or a failure. Just as you use a stick to help you balance, it's totally normal to ask for other kinds of support as well.

      I'm not sure where you're from, but here in the U.S. it is possible to hire a caregiver or a nurse that can visit to assist you with whatever you might need. Having a hand with getting cleaned up could give your quality of life a big boost. It could also help ease the guilty feelings you have about your mom's support. My own mother was a great help with my chronic health needs, but I hate depending on family! You're not alone.

      We are here whenever you want to vent or think about new ideas. I hope we can help you figure out a lifestyle that makes you feel a bit better! Hugs. -Melissa, team

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