Dysautonomia (Autonomic Dysfunction) Community
disability?
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This patient support community is for discussions relating to Dysautonomia (Autonomic Dysfunction) including: Postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, mitral valve prolapse dysautonomia, pure autonomic failure, autonomic instability and others.

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disability?

Has anyone been able to prove their dysautonomia or autonomic dysfunction and get SSDI? I am battling with them and have been since Jan 2010 - they lost my appeal to my denial and now I have to start over.  I saw on the SSDI site that syncope is one of the listed items they approve right away?

attny's will not take my case because I show I'm still working - even at 10 hours per week so I can pay health insurance.

Since they set my pacemaker at 60, I don't completely faint but still have all the other symptoms and dizziness/lightheadedness. On top of my ANS/Heart issues, my spine and pelvic injuries have progressed to where I can't sit or stand, walk or lay for very long because of the pain and numbness.

the ssdi guy said because we own a small business we're trying to "manipulate" the gov't by me getting ssdi...I've worked for the business (INC) for over 10 years - secretary and I worked out in the field with my husband and doing deliveries also before I passed out driving - now I only work about 10 hours per week and am well under their income limits but he kept throwing the business and the "grey" area of manipulation out there!  

I'm so bummed, I pay taxes then our business pays double taxes for my payroll and now I'm told they don't consider secretarial work as REAL work!  hope our tax forms do themselves at the end of the month so the gov't gets our money LOL

heck if I didn't feel this way, I wouldn't have to stay stuck in my house with my kids and the house and work piling up - we have disney passes I'd be using and out having fun! sorry to sound so horrible, I just had to vent..
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612876_tn?1355518095
I am on SSDI (and got on—miraculously enough, so it seems—on my very first attempt), but I was not even diagnosed yet when I applied.  I merely had my collection of signs and symptoms and my "mystery" lack of diagnosis to go off of when I applied.  It's also "a horse of a different color" in another way because in addition to dysautonomia with fairly frequent syncope, I have narcolepsy with cataplexy.  Even at that, as cataplexy (paralysis or weakness spells that some narcolepsy patients have) goes, I have the most "severe" form:  generalized paralysis attacks that can sometimes last for hours and leave me "locked in" so to speak ... unable to speak or move or otherwise communicate to others that i am conscious ... thus I seem to be in a coma or some similar state to those unaware of my condition.  Of course, those come on suddenly just as syncope can, so double my pleasure with the risk of serious injury from falls ... har har.  ;-)

If you can call it that, I may have been "lucky" to have such strange and dramatic symptoms, because I think it bought me my one-way ticket to disability land.  I also didn't manage to even maintain part-time work for long.  I struggled along at 10 hours or so per week for all of I think... 2 weeks was it?  Something like that.  I was frequently getting sent home from work because I had ptosis (see link below) in one eye at the time (yeah, I was having some freaky neuro issues at my onset) and I think my work setting was concerned I was having strokes on their premises or something?  Whatever they thought, I know it didn't *look* good.

http://www.google.com/images?hl=en&client=firefox-a&hs=rTl&rls=org.mozilla%3Aen-US%3Aofficial&biw=1615&bih=830&tbs=isch%3A1&sa=1&q=unilateral+ptosis+eyelid&aq=f&aqi=&aql=&oq=&gs_rfai=

Plus I was passing out all over the place, and getting so fatigued that I literally couldn't get up off the floor at one point, so I called it quits and decided to go stay with my family and try to find a doctor to help me.  At that point I didn't have any source of income or any real safety net to fall back on other than my family, but I didn't see any other options because I just *couldn't* work any more.  Ultimately when I got approved for SSDI, they set my date of disability all the way back to the very first day that I collapsed (in my opinion, the actual date of my sudden onset of dysautonomia) and my Medicaid kicked in retroactive to that date (which was good because by then I already had LOTS of hospital and doc bills under my belt, including a pricey surgery).

I wish I knew something magical to tell you to get SS to understand.  Maybe they do just expect everyone to do what I did and just take that leap of faith and quit working entirely BEFORE you have any guarantee of income (and knowing that even when your effective disability date kicks in, SSDI doesn't start paying until 2-3 months after that, I think ... gosh it's been so many years now I can't remember exactly, but I do recall that there's a gap ... and something about "withholding" your first check until they make SURE you don't owe it elsewhere ... by the time you finally see that check you'll have forgotten they owe it to you).  

One of the NDRF leaders, I'm not sure of her exact title, but she's the social leader or social chair ... she is on SSDI as well.  She is the one who recently published her personal account of living with dysauto.  I know others here in our community have applied, but don't know how many or who have/has gotten onto SSDI for certain.  There are others on SSDI on Dinet as well, or at least were back when I was actively posting there; there's been a lot more turnover of the membership there lately it seems (or maybe I'm imagining that?).  

Oooh, one thought:  who is your autonomic specialist?  It may make a difference having a highly knowledgeable doc(s) filling out that end of the paperwork.  Having the clout of one of the "big name" hospitals behind it probably doesn't hurt either, frankly.  Again, I am basing this entirely on speculation, but like any industry, expertise goes a long way in medicine and having a renowned expert or hospital in your corner probably makes your claim more "reputable" than if it comes from Dr. NeverHeardOf'Em from Hospital Hole in the Wall.  Also, the major experts/hospitals probably have more experience filing these claims and getting them approved; I would guess going to one of those U.S. News & World Report "Honor Roll" Hospitals might have helped nudge along my application.  I'll never know for sure.

Vent any time.  We all have our ups and downs (well, in the autonomic community, they tend to happen the other way around ... you know fall *down* first ... then drag yourself back up).  :-p  Hang in there!!  We're here for you!!!  And do keep us updated.  

<>
Heiferly.
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612876_tn?1355518095
Sorry, that was supposed to be hugs, but apparently it's reading the punctuation as tags.  I guess I'll just have to do it like this:

((HUGS))
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967168_tn?1343732745
thanks for the response; I know you've been through the ringer and appreciate you giving me some advice - I'm completely lost and so tired of fighting.

I had documented from my different doctors that I've had severe and persistent syncope since age 9 that resulted in me fainting while driving and that my heart stops/bp tanks when I faint - documented by my TTT.  The drs go on to say they believe it is cardiac related and so severe that they put in a pacemaker/icd; because I went into SCA 3 times and even the preventative measures taken, I still fainted in their office...denied!

I just got new insurance and have an appt Jan 21st with a new pcp and will go to St. Joe's heart hospital in Tampa instead of a local facility so hopefully I can get them to get all my stuff together and help me with my case.

my husband and I decided it's time for me to quit working all together since I don't even do the work - he's going to hire someone to help p/t doing it because he's bombarded and then has to do the office work also - that's the only way a lawyer will even look at my case; it's crazy but AFTER they take my case or they approve me then I can go back to work? seems like that is manipulating the gov't lol but the ssdi guy told me that.
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612876_tn?1355518095
I think you can go back to work afterward at least up to a certain amount.  I haven't really looked into it thoroughly because it's not really feasible for me at this point in time.  I knew a woman a while back who was on SSDI (for something other than dysauto) who had some income from selling her artwork (and also publishing a book, if I recall correctly?), but I think there's some weird stuff about income counting differently if it's from "art" than from other sources.  Maybe I can find something on that ... lemme Google Fu for a second here ...

Gah, that was a LONG trip down the rabbit hole!  Those Social Security websites can be positively mind-numbing when you're brain foggy, you know??  So I found a *tiny* blurb about it on the SSI site:

http://www.ssa.gov/ssi/spotlights/spot-arts-income.htm

Here are some links about it on this website that all seem to be about the SSI laws as well (look under the heading "Disability Benefits" way by the bottom of the page):

http://nadc.ucla.edu/careers.cfm

Okay, here's a site from Indiana, but since SSDI/SSI/Medicare are federal, all the links except the Indiana-specific ones should be good (sorry, I'm too burned out from Social Security's quagmire of a website to explore these on your behalf at this point):

http://www.artsworkindiana.org/?pageId=54

Hopefully you can find some answers to your questions in general, and some information about that point I was trying to make about income from "art" counting differently somehow as well.  I thought that applied to SSDI also, but maybe I'm remembering incorrectly and it's only SSI?  I don't know ... I give up for today, LOL.

I hope your appointment on the 21st goes well.  It's always stressful starting in with a new doc, and I know you already have a lot on your plate.  Hopefully this will be a step ( or a big leap?) in the right direction.  You deserve it!

Take good care of yourself, and as always, keep in touch!
Heiferly.
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1438638_tn?1304950057
Hi Lisa,
I don't have any words of wisdom, only some of support.  I'm so sorry it is so hard to get SSDI for those of us who really need it.  Of course I wish I could have it as well but I wouldn't even try at this point because of all the difficulty I've seem people who are worse off are having.  It is a Herculean effort and I don't feel nealy strong enough to attempt it.  I don't think it would work anyway.  It's such a pickle...most people HAVE to try to continue to work to make ends meet.  It's terrible.  Hang in there and good luck trying again.
Stephanie
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967168_tn?1343732745
I found this on another forum and thought I would try it, please feel free to try also and let me know if it helps.

Go to https://writerep.house.gov/writerep/welcome.shtml  find your congressman and then find the page for reporting a problem with a government agency.  Keep it on topic, short sweet and to the point of WHY you think your local SSA office isn't helping you etc and why you need disability.

others have said the local representatives love to get cases like this and help, so it's worth a shot
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Avatar_m_tn
My lawyer is trying to convince me to apply for SSDI, since I was diagnosed with Autonomic Dysfunction in July. I have read some of your comments about this. For you that have been denied what was the reasons behind the denial, if you don't mine me asking you. SSDI is one of my lawyers main specialities, so I have faith in her, but I'm only 55 and I carry the insurance for our family. I found out I had AD during the horrible Tilt Table Test. It was suppose to have lasted for two hours, I made it thirty mintues before I demanded that it be stopped. My heart doctor came in read the results and knew exactly what is wrong with me. Have any of you ever contacted Vanderbilt Autonomic Dysfunction Center, in Nashville, TN? I'm thinking of calling them to see how soon I can get an appt., with one of their doctors. They do in Inpatient Research studies. I'm just so tired of being dizzy, almost fainting and catching myself and not be able to go up or down the stairs. I have been off work since this started March 28 of this year. Funny that morning I work up with Veritgo and went to a specialist for that, got treatments and the Veritgo spinning went away, but not the dizzy spells. He sent me to a heart doctor, who has been wonderful, but I need to find out if I can ever go back to work. He has me off of driving also. I work from home, but my office is upstairs and I don't have another room to move it to. The company I work for is one of the largest in the country and I must say they have been awesome about me being off of work, but I know this could change at any moment. Thank you for any input you can give me. Best of luck for all of you that suffer from AD...Marlene
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875426_tn?1325532016
You might want to look at this thread re: applying for disability:
http://www.medhelp.org/posts/Dysautonomia-Autonomic-Dysfunction/Social-Security--Medicare--Medicaid--etc/show/1091637

I contacted Vanderbilt via e-mail and got a nice reply and also I think called and got paperwork to fill out, but I haven't gone for a dysautonomia.  There typically is quite a wait to get in, so if you want to go, the sooner you start the process of working toward getting in, the better.

I'm guessing you had an ear crystal problem which was causing the vertigo since that part was resolved through treatment.  I have a parent who had that too.
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4046955_tn?1349292814
Hello,

I am 26 years old and I too am having trouble getting dissability. My DX is Dysautonomia (multi-system: heart: POTS, pacemaker: dual chamber, syncope, stomach: dumping syndrome & psuedo blockage of small intestine, heat/cold intolerance) which was diagnosed 9 years ago at Mayo Clinic in MN. I also am DX with PCOS w/ insulin intolerance, small fiber neuropathy, "chronic fatigue", very low immune system, mild COPD, migraines, iritis (INNER eye inflammation- indicator for an autoimmune disease) and most recently tested positive for MS per a Lumbar Puncture. I filed my application for dissability (w/ an attorney on board) and was declined. We are on the appeal process but here in Missouri I was told I'll have to wait A YEAR!!!!!! I will be losing my cobra insurance soon and am really starting to panic. Does this sound right?! Is there anything I can do to get help sooner? Any advice would be amazing!!!
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875426_tn?1325532016
It might be reality now, I don't know, what with a lot more people applying of late.  But yes, in addition to praying if you are a Christian, I recommend you contact your congressman's office and see if they can do something to try to expedite things for you.  I had a congressman's office get involved when I was appealing a disability continuing case (the government was planning to terminate my coverage) and the social security office was dragging their feet during my appeal.  I think the letter from the congressman's office may have helped.
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967168_tn?1343732745
I won my SSDI case! thanks for all the support and help.  A couple of things to note on my case and Dysautonmia/arrhhythmia's.

Remember it's all in the details; not really what's wrong with you but how those disabilities/limitations affect every aspect of your life.

There were 130,000 unskilled sedentary jobs I could do without my conditions listed.  That went down to 1600 that could accomodate my need for 3 extra  30 minute breaks daily on top of the normal 2 breaks.

There were 0 - Zero jobs available for a patient with recurring Syncope due to the fact of danger and liability not only to myself but to the workers and employer.

I was told it was a just a process I had to go through being denied twice then approved at ALJ level; so keep up with fighting and good luck in the process.
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875426_tn?1325532016
Thanks for the update & glad you were able to win your SSDI case!  That must be a relief!
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967168_tn?1343732745
it is such a relief and I know so many others are going through the same thing so I wanted to make sure I updated since I haven't been able to type much lately due to a bad fall where I hurt my left hand more..

please PM me if anyone has any questions or needs help - I get email alerts that way =)
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875426_tn?1325532016
I'm sorry you had a bad fall and hope your hand will heal!
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4703993_tn?1379771988
I am just curious. How old were you when you got approved for SSD?  I am 26 with POTS, vasovagal syncope, Chiari malformation, and herniated disks in my back.  I have been on short term disability through my job for about 3 months now and sadly I don't know if I'll ever be able to return back to work the way I have been feeling...
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612876_tn?1355518095
I was just turned 27 when my dysautonomia kicked in full-force, I applied for SSDI pretty much right away, and it was approved on the first try and backdated effective the day I had first had notable symptoms (my onset was pretty clear-cut). I did not have a diagnosis of dysautonomia, POTS, or *anything* really yet; at that point I had symptoms upon symptoms which were clearly disabling but no diagnosis. Although no one informed me of it at the time, it is now my understanding that my doctors submitted it as a psychiatric disability. I will probably never know whether they truly believed it was all in my head or whether they were doing me a favor, but I've accepted that it happened for a reason and was in my best interest either way.

I don't know whether that response helps you any. It can be very difficult to get approved for SSDI; I have watched too many of my friends with dysautonomia and multiple serious comorbidities get turned down for no apparent reason. I am blessed that I have been able to access the benefits that I deserve; I hope you will be as fortunate.

Cheers,
Heiferly.
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4703993_tn?1379771988
I will be 27 in May... I am thinking SSD is the only way for me unfortunately.  I was just starting a GREAT career.  If you could message me any advice or what you put on your application that would be a great help!
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