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Im just curious: Has anyone suffering from CH's ever been able to go on SSI Disability for the condition. I'm an episodic, but I can't imagine how a chronic could function through daily life and hold down a career at the same time. If anyone should be on it, I'd say the poor chronics out there! 

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On 1/24/2022 at 6:19 AM, Jara said:

Im just curious: Has anyone suffering from CH's ever been able to go on SSI Disability for the condition.

More than a few people have been successful.  I don't know how many are chronic.  It is a rough go, though, because "headache" conditions generally aren't included as a disability category.  I think in most of the successful cases there was an original denial of the claim followed by at least one appeal.  The "good" part is that you don't pay the lawyer unless you win (except for fees for making copies, etc.), but that's also potentially a "bad" part, in that the attorney doesn't have a strong incentive to work on a case that's got a low chance of success.  I remember a couple of people saying that it was better working with a local lawyer than with a lawyer from one of the big national disability firms.  And I remember someone saying that unless you have a gigantic file of doctor visits and medications tried, you probably shouldn't bother.  You can put the word disability in the search bar (top right of every page), or some other relevant search term, and see quite a bit for yourself.  

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  • 3 weeks later...

I have plenty of experience with SSDI and CH, as well as Migraine. 1) you will need comorbidity listed by SSDI 2) As of January 2022, it now takes 9 months to be assigned a disability evaluator. Yes, 9 months. Between appeals, and all the crap that you are up against if you are approved-a realistic time frame is five to six years.

Before being a welfare collector, I had successful careers as an HVAC/R and  Oil Heat Mechanic, Gas Fitter, Plumbing, and Electric. Before that, I gave up a dead-end career as a Lexus, and Mercedes Benz Factory Mechanic. I also had a career as a defense contractor. Once the two spinal reconstructions/fusions occurred, it was off to college to waste away 8 years for an MBA/MS and to make far less money.

Then, by junior year the shitshow began, and so did disability. I spent 8 years misdiagnosed, and my new anesthesiologist is certain of a movement disorder, most likely progressive MS. If correct, all the fancy headache clinics screwed up royally. 

You can attempt, ATTEMPT, to expedite the process by congressional inquiry, and an attorney that knows what they are doing (Sharon Christie (RN and Attorney), and even then, you better hope for a ton of financial support.

I'm sorry, twenty years ago was only easy for the quadriplegic dying of a terminal illness, not to be morbid. A close friend fought the VA for 6 years and SSDI for 6 or 7 years in the 90s, if not for him, I have to believe him, none of us would get it. He was the first to take on both administrations.

I am one nut shy of $10 fruit cake, my spine is shot, and I had several, multiple, valid comorbidities to list in 2014. I went through the process of application, doctor review/visit, denial, appeal, and favorable decision in 6 months. I feel bad for saying that, but yes, I received my disability in 6 months, but I'm so fucked up that it only made sense. I did not see a judge, never went for an evaluation, any of those things. I can't help you there. 

I hate to tell you this if you try by headache, you will have a mountain to climb and will need to go before a judge. And it will take several years. I know for a fact that you do not need epileptic comorbidity or any other listing; however, if under 50, Disability is financially broke, you need as many other listings as possible. They do not want more on the rolls.

My advice, congressional inquiry, a hotshot lawyer, to hell with most of your back pay, and patience. Oh, get used to abject poverty. The most that you will receive is $2,000 per month. After your advantage plan, and Medicare, it becomes $1,800. That is a 1 bedroom flat in my area. And you can't freelance. 

Oh, no lawyer takes on your case until you are denied. Most are denied because they don't understand how to provide paperwork/records. Get every record, a medical dictionary, and learn what to send, what not to send. I believe that I read 10,000 pages, but sent 3,500 pages (the stuff that did not incriminate me). I had every doctor write a detailed/succinct report as to why I could not work, and fill out an SSDI report of disability determination (ahead of time). If you think that they do this, you are a fool, and that is why you get canned. Their doctors can only assess what they have.


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Properly construct your sentences to reflect your daily life. Don't tell Disability that you can't lift anything; only for their investigators to bust your ass for lifting a case of water. Say,” I can lift on occasion, but it hurts bad, and then I have to lie down for hours.” Be honest, and stop trying to bullshit a bullshitter. 

Also, SSA and CMS (Medicare and Medicaid) are forecasted to be bankrupt before 2030. When Social Security began, there were 16 people paying into the system, for every person that collected. Now, it is 2 people paying into the system for every person collecting. The baby boomers will drain the remaining funds.

Assuming that you are awarded a favorable decision, you will be subjected to a CDR, continuing disability review in the range of 1 to 3 years. It used to be that only 10% were removed from the disability rolls after a CDR, rumors are it is now pushing 15 to 20%. Very few these days have a 5 to 7 year CDR or permanent disability status.

After each CDR, Social Security claims that they are moving me to permanent status, but instead hits me with a 3 year CDR. It appears a waste of taxpayer dollars to initiate their investigators, and all the bullshit, just to receive the letter each time, “we do not need to review your medical records or contact your doctors, your review is closed.”

Anyways, for most, if you are hit with a CDR, you best be shaking in your boots-they are trying to drop you like a bad habit.

Friendly advice, do not tell your neighbors that you are a welfare collector, get your ass off of social media (disability has a team that monitors this), and my God, do not travel and on top of it flipping post it! Are you slow?  Do not exercise, do not go walking, and freaking hide. If you think I am joking you better start paying attention. And driving is questionable to them. 

Good luck. 

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19 hours ago, Juss said:

Properly construct your sentences to reflect your daily life. 

Friendly advice, do not tell your neighbors that you are a welfare collector, get your ass off of social media (disability has a team that monitors this), and my God, do not travel and on top of it flipping post it! Are you slow?  Do not exercise, do not go walking, and freaking hide. If you think I am joking you better start paying attention. And driving is questionable to them.

Love the properly construct :)

it's one of THE hardest things - to actually label yourself, out loud, as disabled.  When you were raised to be an athlete in a family  of athletes.. and you think of yoourself *still as an athlete.  Just one with some disability issues?  Its like self condemning to not be on the athletic verbal track. Others may see you as old and broke? But you still think if yourself as someone who played professional sports as a career and disability is a major mental adjustment. One that many cannot admit to. Or won't.  If it seems like a jarring dissonance? Maybe at issue is their processing of info AND the way we erroneously present ourselves? I think of myself as a runner.  Its been well over a year since i last ran and only then because i about walked into a rattlesnake. And only for about 10 steps before i had to turn around and reapproach rattler to grab dog collars and move all of us at a walk away. Read online a runners magazine the comment what will he do when he gets old and crippled up?? Will he try to run?  Its odd how many younger, will dismiss you as an entire human, just because you are a disabled human... you no longer are.  Properly construct sentences, indeed ;)

as far as driving? C'mon - even hard core alcoholics are able to drive a car... when they cannot walk! The whole disability topic? Needs to be like, reconstructed with more emphasis on flexibility of terminology and definitions. SS has THE toughest definition out there. Different agencies will define it differently. Say for instance- service dogs. They have a specific definition there from DOJ. Whereas we as a nation have come far, and no longer hide our disabled away? (Or have we not?) Boyo. This is a loaded topic. Isn't it? I do understand what you are saying, though....  Disability, now that its out in the open? and i have to think Vietnam played a major role in that, its still stigmatized and pathologized.  The system itself is not healthy.  Neither are the players.

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I have a driver's license, but I am in a state of cognitive decline-not anywhere near as bad as the ice-cream licker-and my doctors advised me not to drive. Even when high functioning, I chose not to drive. I cannot live with the idea that if I wreck and kill someone, it is my fault. FYI, I can make the ice cream remark, he had a Freudian Slip and confessed to a three-month hospitalization in 1988 for a brain aneurysm.

Plus, I always have narcotics and heavy hitters in my system. While legal, it is my civic duty not to dry. Again, my doctors advise me not to drive. Just use Lyft.

When I said to hide, I meant to hide from SSA. They do pay attention to what you do. And if you think about it, and respectfully, if you are out and about all the time, are you disabled? I only leave the house for doctors. Everything is delivered to me. The majority of the time, I am flat on my ass, in crippling pain. 

While SSA should redefine its constructs, I do not see it occurring. That is unfortunate, but reality. They are bankrupt, and every day, more attorneys quit disability practice. I do not know of any disability practice that assists with SSI, and now, most disability attorneys only take guaranteed SSDI claims. Good luck: it is brutal. 

I advise everyone to invest in catastrophic insurance, think Aflac, and private disability insurance, think MassMutual. Had I done that, I would be in a much better financial situation. If you think that Social Security is solvent and here for 20+ years, wow. I am petrified, and desperately attempting to relearn futures, options, and swaps. 

A friendly suggestion, do not rely on your government. Get the proper insurance, pay now or pay later. Medicare is atrocious as well. As if our socialized medicine is any better, thanks to ACA. 



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22 hours ago, Juss said:

I have a driver's license... and my doctors advised me not to drive....
Plus, I always have narcotics and heavy hitters in my system. While legal, it is my civic duty not to dry.... When I said to hide, I meant to hide from SSA. They do pay attention to what you do. And if you think about it, and respectfully, if you are out and about all the time, are you disabled? I only leave the house for doctor appointments....

That's my point. Do you think of yourself as a driver? Even though you chose not to drive?  And if so? Why not simply exit your dl? Why still keep it? Is it because you don't or won't face it? Or because you basically self-define as an able bodied person who just chooses to not drive (the way things are now)??  I may not own a horse right now? But, i AM  a horse person, always have been & always will be. Ditto a runner(1970) and a weight lifter (since 1987). Even tho im not currently running or lifting. Its like self defeatist to say you are no longer... you... - no longer who you define your own self intrinsically to be.

Yes. SS love to be bullies, bad actors, don't they...

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I keep the DL for my ex and the title to the car-it is complicated. Old marital issues, a matter of formality. Concerning defining, I would not say such. I hold the DL, in a glimmer of hope that I halt the progression, adapt, and dare I say recover. I can rent a luxury SUV for $60 thru Lyft per day, or a nice/clean compact for $40 per day. If I do not make progress within a few years, I will assess and make the determination.

And, I am not able-bodied. My doctors are flabbergasted that I do not use an ambulatory aid. I refuse to use a cane, which I did use from 2010 until 2016. A cane is a royal PIA. As are those walkers with the wheels. I used both. Instead, I did an unhealthy, piss-poor adaptation, with an abnormal gait. Hey, it works for now. They say that I walk like Frankenstein. And I have severe kyphosis despite a massive correction by fusion/reconstruction. Hell no to the knife again.

Self-defeatist, possibly? At this point, getting out of bed, cooking/cleaning, and self-care, each day is a major accomplishment. Thank God for the depression and SI being over with. I used to never be satisfied when money was not a concern: I always wanted more. Hedonism and Materialism. Now in poverty, I manage and in some regards, am happier. Not suffering for a few hours makes me smile. The ability to read for a few hours places a huge smile on my face. It becomes the little things. 

I don't consider SSA bad actors. Oh boy, that stirs the pot. They just have too many trying to get into a system that has no funding. And, they are selective for reasons that most need to think about. The subjective cases are always difficult: the objective cases are always easier. I tell them that I hand roll my dumplings, and make yardbird and dumplings, but I also tell them that it lasts for a week, and I am in excruciating pain for at least two days. I am. My muscles are tight, and my lower back locks mid-position. I cannot get upright. 

Tell the truth. That helps. Tell them what you do. Then, how it impacts you. Yeah, I cook shrimp and grits, split pea and dumplings, chicken and dumplings, and sweet potato biscuits, but I pay dearly for it. And the same applies to that scrapple and eggs that I have for breakfast, every morning. 




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I'm afraid that this is getting off the topic/question pertinent to whomever this forum user asked in regards. That stated when the specific situation by which you speak occurs, it is unfortunately because someone called SSA and they initiated an investigation or some other inauspicious reason warranted the process. To my knowledge, the harassment does not begin until they have a motive. Unfortunately, it generally is a false one.

The other reason could be during your CDR, which goes back to my point, pay attention to how you live your life. 

In my final closing on this thread, you can receive disability benefits for Cluster Headaches, if chronic. The same applies to chronic migraines. Having multiple comorbidities helps to increase the likelihood of a favorable decision, but the days of those comorbidities expediting the decision are long gone.

Good luck to all.

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