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I got word last week that I have finally been approved for Social Security Disability Insurance benefits, in the second ?reconsideration? stage. Now I can concentrate on getting better, instead of trying to prove my illness.

While I cannot be certain why I was approved at this second, nearly identical stage to the first, it was most likely due to one or both of the recent submittals. First, I made a copy of the video many of you have seen, ?POTS on a really bad day? and sent it to my lawyer, who forwarded it to social security. Of course there?s no way of knowing if anyone there actually watched it. But the second ?piece of evidence? submitted was probably what sealed the deal.

About a year ago I purchased a device called a ?SmartSync Heart Rate Data Logger? made by Oregon Scientific, which is tuned to receive the signal sent by Polar and other heart rate chest straps, it records the heart rates in real-time and then displays and prints out the graph after hooking it up to a computer. My lawyer asked me to record my supine-to-standing heart rates, 3 times a day at the same time, for a week. Every one of the 21 recordings showed a rise in heart rate of more than 28bpm, some rising as high as 78. He then submitted the printouts to social security, along with an explanation of why this qualifies me for disability. I am sharing it below, in hopes that some of you here can benefit from it and perhaps get to keep the other 25% of your retroactive payments, should you decide to go it alone.

?The claimant purchased a heart monitor to monitor when he is having an episode of tachycardia due to postural orthostatic tachycardia syndrome (POTS). The enclosed records show that every time he stood up, his heart rate increased on the average by 52 bpm. It is important to note that this change in heart rate is not related to exertional activity. The mere act of changing his posture and standing up causes his heart rate to change not only significantly, but also rapidly. On the average, he reached his peak heart rate (which reached as high as 149 bpm from the enclosed records) in as little as 17 seconds. To emphasize the point, my client recorded one episode and the video clearly showed the speed at which his heart rate changed.?

?As my client described it, when he experiences a tachycardia episode, he feels like he just ran a marathon. He can suffer from symptoms of headache, dizziness, light-headedness, sensations of near syncope and nausea due to the rapid change in his heart rate.?

?Under the Listing of Impairments in 20 CFR ? 404, Appendix I to Subpart P, 4.05 Recurrent Arrhythmias, it states that ?uncontrolled, recurrent episodes of cardiac syncope or near syncope? is a disabling impairment. An arrhythmia is defined as ?a change in the regular beat of the heart,? such as tachycardia. Recurrent is defined as findings occurring at least 3 times in a 12 month period. See 20 CFR ? 404, Appendix I to Subpart P, 4.00(F) and 4.00(A)(3)©. According to the records enclosed, my client suffers from an arrhythmia every time he stands up. These findings alone refute the prior decision that my client could return to work. This is sufficient to establish that my client meets the listing for a recurrent arrhythmia.?

?Moreover, my client could not work at any job, unless they allowed him to work while he was lying down and there was almost no requirement of standing or walking. These types of limitations so significantly erode the occupational base at any exertional level, that my client is disabled under the Medical-Vocational Guidelines.?

?For all of the above reasons, we argue that my client should be found disabled. Thank you for your consideration.?

Harrumph!

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I agree that your lawyer was pretty on top of it and knows their stuff! I'm really happy for you. :D

Sadly I have been sick for so long that I will never be able to qualify for payments unless I apply under my spouse's work credits, which likely complicates things even more. I got sick pretty young, barely making it through jobs, so I don't have enough work credits to apply under my own. How crazy is that? :huh:

I've seen the video you posted before and it looks like we have similar symptoms/problems. Good luck and I hope you can figure out how to feel better!! Let me know if you do because I'm running out of ideas. haha

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Congratulations on making it through all of the difficulties of getting approved for SSDI! Now you really can concentrate on getting better and have one large stressor off your shoulders.

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Wow, congrats on getting through on the 2nd try! I just got denied and have to go to hearing:-( Problem is I first had lymphoma, so initially that was put on as one of the diagnoses, along with CFS. The POTS diagnosis arrived in time to do the 2nd appeal, but they still didnt address any of the other conditions and just kept denying me due to lymphoma. I made the lawyer check with SSDI to make sure they received and looked at all the other info since they only referenced lymphoma, and she said they did, they just didnt write it in the letter. How stupid? If they're gonna make us go through this , at least fill out the rejection letter properly. Alot seems due to my age, I'm 31, so thats "too young" for them to give the benefits up. But for the hearing, I'm not messing around, I'll submit POTS brochures and research articles that say the condition is disabling, and good idea, I'll try to get a copy of the video too. Ha, and I'm gonna cut/paste what your lawyer wrote and see if it helps mine. Thanks for sharing! It's such an ordeal as you know to go thru this. I'm also on my companys disability, thankfully! cause that's how I've been surviving this past year and a half, but its' so scary. they make drs fill out paperwork every few months or more to keep it, and doctors suck so much, i'm having a hard time finding a reliable dr to do that. if ssdi goes thru, not sure how often they require updates. Anyway, thanks for the info.

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Thanks everyone. It?s been a long, excruciating process, but worth it in the end.

Dana ? While you may not qualify for SSDI, you may still qualify for SSI, depending on your household income, regardless of your work history. Check out ssa.gov for more information.

Caterpilly ? You?re certainly welcome to copy my video and show it to the judge (just search ?simbofats? on YouTube) but I?d think it would better bring the point home if you made your own, but I doubt you?ll need any evidence but your own body at the hearing. If your symptoms are anything like mine, when you stand up your heart rate will increase by at least 30 or 40bpm and you?ll start sweating within a minute or two. All you?ll need to do is come to the hearing wearing a chest-strap type heart rate monitor watch and show the judge your heart rate while you?re lying down or sitting reclined with legs elevated (60bpm?). Then stand up and read out loud your heart rate increasing to 90, 100, 110? the more the better, as long as you can stand it. If you pass out, you win! The reason I recommend reading the numbers out loud, even if the judge is looking directly at your watch, is for two reasons: first, everyone else in the room will hear it too and their reactions will work in your favor; secondly, we know that any exertion increases our heart rates further, even talking. Is this cheating? I don?t think so. Are there rules specifically stating you cannot do that? Anyway, once you?ve definitively demonstrated your ?arrhythmia? you can quote the criteria I posted. That should be a slam-dunk, lymphoma or not.

As far as updates once it's approved, that depends on the category into which they place you - one of three. The first one (and I don't remember the exact names) is "recovery expected" and they re-evaluate your condition after 6-12 months. The second is "Recovery possible" and I believe they re-evaluate you after 1-3 years. The third is "recovery not expected" and re-evaluation occurs after 5-7 years. I can't say why, but I was lucky enough to be placed into the latter category, so they won't bother me for a long time and I can concentrate on getting better so I can contact them instead and tell them I'm back to work, when I'm ready.

Maggie ? My pleasure. I hope it helps your case.

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As far as updates once it's approved, that depends on the category into which they place you - one of three. The first one (and I don't remember the exact names) is "recovery expected" and they re-evaluate your condition after 6-12 months. The second is "Recovery possible" and I believe they re-evaluate you after 1-3 years. The third is "recovery not expected" and re-evaluation occurs after 5-7 years. I can't say why, but I was lucky enough to be placed into the latter category, so they won't bother me for a long time and I can concentrate on getting better so I can contact them instead and tell them I'm back to work, when I'm ready.

I didn't know about the different categories, Simmy. I, too, was placed in re-evaluate in the 5 to 7 year o slot. I have a feeling, though, that age plays into it - a 35 yr old with the same history and dx may still be re-evaluated in the 1 to 3 category.

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Interesting to know about the categories.. And as for the heart rate demo, my symptoms are different and my heart rate doesnt consistently increase that high. It's often borderline. and that was one of my concerns, the day I got my recent tilt it was 29beats, so that doctor's report had to write "suggestive but not diagnostic of OI".. but he did write that the extremes in the valsalva testing and almost 30beat increase, as well as other things like my prior positive tilt and symptoms, etc.. are "other features supportive of OI" . I then just had the other doctor who diagnosed me (not the dr who did the tilt), write a letter to explain eventhough the HR might not always be 30+, the diagnosis still stands. And he did catch it at 30, 34 in his office, so I have that progress note to document it. Also, it seems that the amount of increase in heart rate doesnt necessarily correlate to symptom severity, so even though I might not jump up 50 beats, my symptoms can still be disabling. So hopefully I'll be able to find a way to explain all this to them that makes sense. One thing that I think shows how my symptoms were worsening each year til I couldnt function anymore, is my work history alone. I modified my jobs from year to year, from more physical work , to less and less physical, til I couldnt even tolerate a desk job anymore. So I'm hoping that will be in my favor, that I tried to hold out as long as I could, but after about 14yrs, my body called it quits. We'll see.

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So glad you were approved!! I had such mixed emotions when mine was approved. I was relieved that I didn't have to appeal at all but it was a bit depressing as well that I met the qualifications that easily. Hope you can now focus on getting well!!

Brye

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Page 7 ? Benefit Termination

http://www.socialsecurity.gov/policy/docs/statcomps/di_asr/2009/background.pdf

?How often a case is reviewed depends on the severity of the impairment and the likelihood of improvement. The frequency can range from 6 months to 7 years. Here are general guidelines for reviews.

? Improvement expected?If medical improvement can be predicted when benefits start, the first review will be 6 to 18 months later.

? Improvement possible?If medical improvement is possible but cannot be predicted, the case will be reviewed about every 3 years.

? Improvement not expected?If medical improvement is not likely, the case will be reviewed about once every 5 to 7 years.?

Noreen ? I agree. Age must be included as a consideration. I?m 46 and have paid my taxes for 26 years, so that might have made the decision to place me in the latter category easier.

Caterpilly ? Sounds like you have doctors who support your case and yes, even if heart rate doesn?t always exceed the POTS benchmark the other symptoms can still be, literally, disabling. Your declining work history will also show you had intent to work, but your illness stopped you. The problem with this syndrome is its relative invisibility and therefore it is difficult to prove. In my case the massive heart rate jumps can be easily demonstrated to a judge, but I worry for others who suffer as much as I do, if not more, but don?t have that one visible piece of evidence to produce. I hope you find a way to ?show? it.

Brye ? Thanks. I know what you mean. I?m now officially decrepit, but it?s a job and someone has to do it :)

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  • 2 weeks later...

Simmy,

I sent the info you posted to my lawyer and he told me to start the process. Now I have some questions for you. While my heart rate goes up it does go down while I sit. That's why I was denied the first time. They told me to get a job that only requires me to sit. Does your heart rate go down when you sit? How did you address this issue? I can get out maybe three times a week and I could never sit at a desk and work for eight hours. Another question I have is as I hydrate during the day my heart rate drops so it doesn't go up as fast later in the day. Is this going to be a problem? I'm sorry for all the questions. Did you write on the graph what you were doing at the time that your heart rate was up? As you can see I need alittle help here.

Maggie

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Maggie,

I don?t know what your actual heart rates are at different positions, but in my case, lying down around 60, sitting 80-100 and standing 120+, so although my heart rate is considerably lower when I?m sitting, it is still well above what it should be in that ?inactive? position and in fact sometimes exceeds the POTS criteria of 30+. If you?re anything like me, that should be sufficient.

I imagine, if worded properly, your lawyer can argue that while you may be able to sit for a while, you cannot for a long period of time and certainly not for eight hours, five days a week. The reason is that, although your heart rate goes down when you sit from a standing position, it does not drop to nearly the same level as that in a horizontal ?resting? position like that of a healthy person, so it works harder and harder just to keep you in that position, which builds the inevitable exhaustion, disabling you from continuing or showing up for work the next day. It is also important to explain that tachycardia is but one of many, disabling symptoms, including blah, blah and blah, but it is the only one that is easily demonstrable.

A commonality many of us share is feeling lousy in the morning and somewhat better in the evening, so I should think that wouldn?t be an issue one way or the other.

Yes, I did add a few notes on the graph indicating when I was lying down and when I was standing. Here?s a link to one of them:

20100529-3B

I hope that helps.

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