Can you get disability for having clusters

%d comments
  • Going on 4 years as chronic. Was told I need another major disability to apply. Maybe because I was self employed???

  • From what I've read: Yes, if you're chronic and can get some documentation that you cannot work.

  • CCH here, and been on social security disability because of it for over three years now.

    You're gonna need a paper trail from every doctor visit you've ever had that pertains to CH, and give accounts of your employment history and how the condition interfered with it.

    I thought that I'd have to go through a bunch of denials and end up having to hire an attorney - but I was VERY thorough with my documentation and explanations, and I was approved four months after my first application.

  • Hey Roland...would it be possible for you to message me an idea of what kind of information they're looking for. My issue is my age and education. They feel I'm too young and my earning potential is too high, so I've been denied even though I had a written diagnosis from my neurologist. I'm just wondering what else I can include to help get my claim approved. Thanks for any help!

  • been on DLA for more than a few years now, but do also have a motor neuron disease as well

  • I wasn't able to work for a few years because of my headaches. I had notes for every doctor I saw. Add letter stating that I was unable to work and permanently disabled. Disability denied. They told me that cluster headaches were not a recognized disability :-(. Reading here it doesn't seem like that's the same every where though

  • I did have help from the consulants at national hospital for neurology and neurosuregery as well when was renewing it

  • I get it Shaun, I'm cch, I'm in the UK, were are you?

  • I would imagine that a competent attorney specializing in disability benefits would be critical for that.

  • I have been denied for over 2 years . How did you get it? Shit has ruined my life. Ditto on what Stephanie Niziolek said on info. Except 56 now.

  • It's not easy, took 4 years, but have had it for 9 years. Hang in there.

  • I am a Chronic Cluster Hadache sufferer. Like Roland, I was approved for SSDI on the first try. You definitely have to send a well documented, detail oriented application when you apply. My packet was probably 2 inches thick with records from my PCP and 2 Neurologists. The key is for your doctors to document extensively your symptoms, all testing that was done and all treatments tried in an effort to prevent or abort cluster headache attacks.

    In full disclosure, my employer's Long Term Disability insurer assisted with the initial application. However, I did ALL of the leg work to gather documents and put the final package together. The LTD carrier had a vested interest in helping me get approved for SSDI...because that meant that they have to pay me less every month (Salary - SSDI = LTD payment)

  • I'm trying here in California. Have a hearing date for June. Denied first time of which is standard practice I guess in 2014 appealed and denied again. All doctors: neurologist, GP, and physical therapist state for record total disability. I'm Chronic Cluster with Weir Mitchell's as well. Medication does not work. o2 and sumatriptan sometimes but not always. This has been a hell ride. I read here where someone stated the only thing left of who he once was is his name. Ditto for us all I'm sure. He couldn't have said it better. My mental hurts as bad as CCH.

  • I get it in the U.S.