lp3 Posted August 22, 2016 Share Posted August 22, 2016 5 year chronic. 3-5 daily attacks. After months of busting I still get at least one per day. I am a terrible chronic. Lost my jobs, some friends, social life, blah, blah blah! Question, What are my chances of getting on US disability. Any tried? Any success/horror stories. I am so poor that I live without running water or electricity due to lack of money. This is not a sob story for pity please. Just need advice thanks. Quote Link to comment Share on other sites More sharing options...
Dallas Denny Posted August 22, 2016 Share Posted August 22, 2016 G'evenin lp3! So, what I know is they won't approve it for clusters as I understand it, BUT, I just recently read something on facebook about a CCH patient getting approval with the affliction being classified as some type of epilepsy. I'll see if I can find that thread and post a link for you. Dallas Denny Quote Link to comment Share on other sites More sharing options...
Dallas Denny Posted August 22, 2016 Share Posted August 22, 2016 Here ya go..hope this helps...the dx is called non convulsive epilepsy https://drive.google.com/file/d/0BwHf09yeneJnTllPQUpYWExncjg/view?usp=sharing DD Quote Link to comment Share on other sites More sharing options...
CHfather Posted August 22, 2016 Share Posted August 22, 2016 We've had threads on this topic over the years, as you might imagine. Some people have received disability for CH, but it's generally not an easy road. I'm not going to completely disagree with Denny. It's a challenge because, as that letter states, "headaches" are generally not eligible for disability. But I think the letter is saying that CH and migraine can qualify for disability under the "most analogous heading," which is (or was, since that letter is a couple of years old), "non-convulsive epilepsy." A skilled disability lawyer could tell you whether that means that you apply on the basis of your CH and the judge will consider it under the general category of non-convulsive epilepsy, or whether you somehow have to claim that you have non-convulsive epilepsy in order to get a hearing. I think it's the former -- you apply on the basis of your CH. I think that's why the letter says that the "adjudicators have received special training and policy guidance on how to evaluate migraine and cluster headaches." A lawyer, as you may know, is "free" in these cases, in that the lawyer doesn't get paid, except for direct expenses such as photocopying and mailing, unless you win. A lot of people who have won favorable rulings have done it themselves, and several have said that if you win, the lawyer takes too much for having done too little. Some have felt that even the direct expenses were more than they wanted to pay (a few hundred dollars in some cases, as I'm remembering, in part because many people with CH have pretty big medical files to copy). Frankly, I was surprised that the most common opinion seemed to be that you should handle the case yourself, since you know your history better than anyone. Another long-term contributor to this board said that he finally had success when he hired a local attorney specializing in SSDI, rather than going to one of the big national law firms that handles SSDI. In most of the cases that I know of, people were denied the first time they applied and won on a later appeal, sometimes, as I understand it, a second or even third appeal. But not always -- sometimes there was victory on the first try. The people that I know of had very long histories of chronic CH and big piles of reports showing how many things they had tried for treating their CH. Heck, I should really just dig up a few links to those threads and let you read them yourself, instead of my poor attempts at a summary. Hold on a minute (:-)). Here's one: https://clusterbusters.org/forums/topic/3820-ssdi-assistance-request/?hl=disability Another: https://clusterbusters.org/forums/topic/1514-social-security/?hl=disability #3: https://clusterbusters.org/forums/topic/582-finally-got-social-security-disability/?hl=disability Quote Link to comment Share on other sites More sharing options...
lp3 Posted August 22, 2016 Author Share Posted August 22, 2016 Thanks for all the responses. I will try to gather records and get a lawyer. I am desperate. Thanks again. Quote Link to comment Share on other sites More sharing options...
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