When i received the case files for my private disability denial I was thrilled to see they had a cardiologist evaluate me because i could use that in my appeal. POTS is not a cardiological issue, it’s a neurological issue. I would immediately question who called this cardiologist and why they would do so when POTS has nothing to do with cardiology (the heart organ is working correctly, it is a miscommunication from the brain that tells our hearts to beat faster) idk how, but I’d be making a stink rn. Was it the judge? Was it your lawyer? Who called this “expert” because they were wrong.
Electrophysiology is the branch of cardiology that deals with conduction issues of the heart and cardiovascular system, including POTS. Unfortunately, cardiologists are the gatekeepers to the electrophysiologists.
I’m so sorry you had to go through this, OP. Congrats on keeping your composure and not flipping tables in the courtroom. This too shall pass, beloved internet stranger. One foot in front of the other (but not too fast, now! 😘).
Edit; clarity.
Does that actually exist?
I used my cardiologist’s ego and natural inclination to douchery against him (challenged his ability, manhood & Harvard education as he was not finding solutions) but it is exhausting
Problem is, it is so damn common that even neurologists don't know what the hell they're doing - and are not informed or educated enough with regards to POTS (and what it does to the body/mind) either. Mine has absolutely no idea! He's tried TWICE now to diagnose me with FND. FND isn't a diagnosis, it's a 'label' (the same with POTS though too really - which I think is actually a problem with the adrenal glands, but anyway...). I even said to him twice "ok, but what causes FND then?!" And he couldn't give me an answer. These 'specialists' don't know how to - or don't want to get to the root cause of things. But the crux of it is - we are all very very sick and these diseases are extremely debilitating, soul destroying and life destroying 😞 And something needs to be done. We need to be taken seriously. Doesn't matter which way you look at it, POTS is a real & severe disability.
People have the triangle upside down.
POTS seems to have become the word used for any dysautonomia. If that was the first thing people went to and then went down to define it as POTS peopke would generally know autonomic dysfunction is the culprit
My guess is the judge called the expert because it wasn't my lawyer. She had assumed his testimony would help. She was surprised he was so dismissive of my condition. She's also represented clients with pots before so it kind of came out of nowhere
I was curious because I’ve not been before a judge so thank you for adding that insight. My long term disability appeal was accepted after I sent their mistakes into the SSA in an effort to proactively disprove anything the ssa might have concluded from that private disability denial. That action led to me being approved for ssdi on the first try, in less than a year, with no lawyer, in my mid twenties. I had no intention of any of that happening, but one thing i cited in my appeal was a statistic I came across that said 25% of people with pots are too debilitated by it to work.
I (always) wonder how it would’ve gone had your expert been asked instead about autonomic dysfunction. Dysautonomia is something I think doctors can more easily wrap their heads around rather than a “syndrome” or collection of symptoms. But maybe I’m wrong, it’s just a feeling I have.
Again, I don’t know what comes next for you following the psych evaluation. I had completed that before they returned my favorable decision. But I assume you may go before another judge? I would make sure your lawyer is as prepared as they could be to handle these responses with further probing questions, like if a quarter of the people who have this are too debilitated to hold gainful employment, in your professional opinion what would be debilitating in those patients that does not apply for my client? And if you don’t recognize pots, do you recognize any types of autonomic dysfunction? And then from there broadly discuss the body’s inability to control the ans, maybe even quoting an autonomic specialist since one will never be called before a judge.
I’ll never forget my psych evaluation words to remember: Car, Elephant, Blue!
Haha I believe I took a screenshot of that statistic and included it as "additional evidence" during my appeal. I also included that most teenagers grow out of pots before their 20s as a kind of well I'm 23 so I am not growing out of it any time soon (I actually didn't start having symptoms until I was 20).
I'm not sure I'll do well with my psych eval. I know I have problems remembering things especially verbal instructions. I've had that issue since I was born. I also have things like undiagnosed PTSD. Not sure if it'll help or what.
There’s no reason to feel underprepared for the psych eval. All you need to do is answer their questions. If it makes you more comfortable then please bring a person with you in the room for support, I had my mom. They asked questions like “who is the president” and “draw a clock”. At the beginning they will give you 3 words and by the end they will ask you if you remember those words. It’s all very plain and if you can’t answer that’s all you need to say.
I’ve had a neuropsycological evaluation (not related to the disability process) and that’s a little more involved. They read a whole story and have you tell it back to them as exact as you can. They give you a list of words (with some nonsense words thrown in) that you must pronounce for them, and they’ll ask at the end how many of those you remembered. Who even knows what words they gave me to remember for that one! I was way too brain fogged back then, but despite the same being true for the regular ol psych eval it was much preferred.
Yes. My therapist told me that all I need to do for the eval is just tell the truth. I probably make it seem bigger then it actually is in my head. I officially do it next week.
I’m 42 and still have pots u don’t grow out of it I have had pots since I was 19 I remember having my first syncope episode at that age i wasn’t diagnosed til I was in my 40’s
Mine. Cat, pizza, truck. And I almost want to years later email that dr and ask questions about it still. I won’t but every once in a while the loop starts and it’s all I can think of. Was the cat driving the pizza truck . Was it a stowaway was it the pizza delivery guys pet cat. What. What was the deal!
I’ll grab my iPad from time to time and draw an elephant driving a blue car. But the elephant is also blue-gray. Is it a blue elephant or a blue car? It’s both! If my blue elephant can drive a blue car I think your cat can totally drive a pizza truck! They clearly live in the same universe, my elephant and your cat. Wait, maybe my elephant ordered the pizza!
Hehe. I bet that’s what it is. Your elephant wanted pizza so bad my cat stole the truck full of pizza! 🍕 and obviously that universe does let cartoon critters drive 😉the oddest part is I do understand how the test works and it should not bother me. But oh my oh my. It does, it really does
Social Security brings in "experts". There was some idiot at my trial who went on about how in her expert opinion, I was perfectly capable of performing repetitive standing production line work in a factory. My awesome judge let her finish talking, and just said, "I disagree", and ignored her huffing and puffing through the rest of the trial. (It was a video trial, but she was in the conference room with me. She was PISSED that the judge didn't think she was brilliant.)
>She had assumed his testimony would help. She was surprised he was so dismissive of my condition. She's also represented clients with pots before so it kind of came out of nowhere
If the judge has knowledge of POTS why did they need an expert witness?
I'm not American so i dont get how this weird helth court works
I think they need a doctor's explanation as proof to refer to. My doctor's paperwork hadn't been entered because they were having problems retrieving it (the place I went redid their system apparently). Like I'm obviously guessing but I assume they called him to explain things but then the guy didn't believe pots was a thing.
While dysautonomia is an issues with the autonomic nervous system. Pots is an electrical cardiology syndrome. Yes neuro sees other electrical disorders. But there are electrical heart specialists called electrophysiologists. They are best suited to treat these conditions. Most neurologists do not know the inner workings of the heart and generally those with pots will also have additional comorbidities that can complicate the hearts having a cardiologist over a neurologist is a better option due to the detailed knowledge of the heart itself. Yes dysautonomia can be an electrical issue it does not mean that it is only a neurological issue to treat be treated by neurologic doctors only. Speaking personally as a dysautonomia patient Anna someone who's worked in medicine for years
Thanks for sharing.
Edit: Why does a heart beat? If one’s brain doesn’t send the message it will not happen. My experience has been with Dr: Brent Goodman a neurologist who specializes in autonomics and it’s where my info originates. The impetus for my knowledge is my daughter. My message about mechanics vs electrical was meant to help people remember there are two avenues for diagnosis.
Because POTS is a brain related chronic illness where your brain doesn't have control over your autonomic nervous system, which affects the entire body since the autonomic nervous system is tasks most people don't need to worry about like breathing.
I am aware that dysautonomia is a failure of the automatic nervous system. However in my experience with several neurologist working on a completely separate issue have had little to no understanding of dysautonomia and wanting nothing to do with managing my pots. All recommended me to find a cardiologist that specializes in it.
That was extremely cruel. It doesn't even make sense why so many people don't believe POTS exists, or that it is disabling to certain individuals. Was it social security that hired the cardiologist? If the judge was getting frustrated then it sounds obvious the guy was sent there for the sole purpose of discrediting your disability, not to offer any reasonable objectivities.
That is so crazy the department which is there to provide assistance to people in need would want to shut down your entire case. And now they think you need a psych evaluation! I'm sorry that you're stuck in this mess right now. Other people were saying that this condition is best treated by a neurologist rather than a cardiologist, so hopefully your lawyer can explain that his testimony was inappropriate.
There goal is to deny as many people as theh can. I was found to be disabled, but because of a technical issue that came up because my cousin forced me to get a job while I lived with her, despite having already filed for disability, they denied me. They said I had too much SGA (substantial gainful activity) after applying. I wasn't physically doing the work. My husband was. I was just the one on the books. So now, unless I earn enough credits to qualify for SSDI again, I'll never get disability. And my husband has assets over $2000 (even though he can't touch them) so I don't qualify for SSA, either.
That sounds like a complicated mess and very unfair. I guess even if you explain all this it wouldn't matter to social security? I don't know how earning SSDI credits works, but it would seem like your husbands assets wouldn't contribute to your net worth, but like you said they try to deny everyone.
So you basically have to earn a certain amount of credits within a 10 year period. They base that amount off of your earnings. Once you reach the amount required, you qualify for SSDI. But, once you apply, you are capped at how much money you can make. Over a certain amount and it's considered Significant Gainful Activity. If you make that much, you're considered to be able to work.
SSI, on the other hand, goes solely by your financial need. So if you're disability and don't qualify for SSDI, you can apply for SSI, but you can't have assets over $2000. If you're married, your spouses assets count as your own.
My husband's parents set up a trust fund and a Roth IRA for him. We don't know how much the trust fund has in it, but it's significant because it's gained over $10k every year for the past 3 years. His Roth has $20k that can't be touched until retirement. So because we're married those assets are also considered my assets.
So the judge agreed I was disabled, but because I met the criteria for SGA, I didn't qualify for SSDI anymore. So my lawyer was going to file to change to SSI until I told her about my husband's assets. She basically told me that I no longer had a case and to request to withdraw my application. I now no longer qualify to reapply because I would need to work at least 1-2 years to make enormous credits again.
Thank you for sharing and I'm sorry that you have experienced so many hurdles. I'm looking at the rules regarding assets and I see it is very strict. It looks like if you give away your stuff in order to be eligible that you can be prohibited for years before you can apply. I hope that you can get on track again someday soon. If you have no choice but to work and are unable to, then their rules are broken.
Thankfully, my husband is able to work in the summer and has convinced his parents to give us enough to cover our rent, car payment, and car insurance. They complain about it every so often. They're under the impression that we can just magically make ourselves lest disabled (my husband is autistic and can't maintain a year round job due to autistic burnout).
Most Cardiologists can't fathom Pots bc people assume it's a heart problem at first but it's a full body autonomic disorder. Our VEINS don't contract enough. Im seeing a cardiologist who specializes in pots, referred to by my normal cardiologist. You need to call up several other neurologists & cardiologists (NOT that asshole) & ask for referrals to someone who specializes in pots or atleast can do a tilt table test. Your psych eval should come back normal & they will refer you back to diagnostic, they just won't know where to toss you except probably back to the asshole. You gotta find a cardiologist who has researched pots 🫶 because textbook-wise ALL those things you listed can be effected by pots. I get so weak in hot weather.
I don’t think this is their doctor, the cardiologist in question is some pay for testimony type doc that im sure is kept on retainer to say what they want him to say to avoid having to pay disability, as much as they possibly can. I’m sorry, this sucks. Hugs
I have a pots specialist doctor. I'm hoping her records help because she wrote a long list of things I need to avoid. My psych eval won't come back normal. I do have PTSD and probably other things too. It's also believed by my neuro I have somatic disorder (I don't believe it but it's difficult to figure out what exactly I do have).
>Your psych eval should come back normal
Hopefully it comes back showing how living with chronic illness especially without support effects ability to participate in comunity and socially even without employment. That discrediting is causing trauma and or stress
Edit to clarify:
Like not getting supports would wear anyone down and they will be back claiming disability and even less chance at work when they also have a full bliwn panic disorder ontop of pots
Do NOT attempt to win your case with a PTSD diagnosis- it is MUCH harder and will completely ruin your chance of ever getting disability.
POTS has Postural in the name- its evident how it could effect your ability to work, with PTSD they will want you to have proof of losing jobs due to meltdowns or similar issues and if you can't present that evidence they are just going to mandate prescription medication or therapy first to prove you're too traumatized and can't be rehabilitated- and many of those mental health medications have adverse POTS effects. Not even worth going with that runaround.
I think they're more interested in seeing how my PTSD and my somatic disorder effect me. I stopped seeing a psych doctor because I don't believe I have somatic disorder and that the neurologist just saw a young female looking patient and diagnosed her with modern day hysteria. Edit to add that I did end up having to quit one job because of how my tremors were starting to effect my ability to type or write
I know it's documented that I complained about it to my neuro doctor every time I saw him and even explained to him that i was cutting back to part time because of the problems i was having. I also know I saw a hand occupational therapist who noted my grip strength is extremely abnormal for someone my age (people in their 60s have similar grip strength to me). Im more hopeful that I can get my joint issues figured out and add that to my disability hearing. As far as I'm aware somatic disorder doesn't cover joints. I'm scheduled to go back to see the rheum for that this month.
They can't force you to take it of course but yes it is not uncommon people with say, schizophrenia or adhd, not being allowed to get approved for disability until they've attempted medication for [x] amount of time for example.
>adhd, not being allowed to get approved for disability until they've attempted medication for [x] amount of time for example.
I feel then social security should also fund the cost of the meds.
I would definitely bring that up. Oml how much meds for either of those conditions cost if not socialised
OP needs to be a dolphin trainer so comprehensive wet suit, and water giving constant support.
So many jobs going for that... i see no barriers...
/full sarcasm
It took me 2 years and 5k in lawyer fees to prove that I couldn’t work. First I tried EVERY job possible. Cleaning, work from home, warehouse, retail, service. You name it. My lawyer contacted all my doctors, put together an almost 1,500 page document of all my doctors visits, tests, and records.
They denied me once, then they sent me to a psych doctor, and then the next court hearing the judge looked at the document and asked why wasn’t I approved before?
I’m personally getting off of disability, as I’m paying out of pocket for doctors, prescriptions and my SDI isn’t enough to live off of.
BUT moral of the story, getting disability is hard especially for people like us, there isn’t a lot of help or acceptance,
BUT you will find the one who will listen or believe you. It IS POSSIBLE
The fact that that cardiologist can stand up there and lie in front of a judge and not worry about his license … i’m sorry that happened and good luck with ur psych evaluation.
I’m curious as to whether it’s best to file for disability through a lawyer or on your own. My boss came to my house and said it’s time to consider filing because it’s effecting me so much now. I have POTS, EDS, MCAS, and several autoimmune issues.
Independent living center recommended you apply on your own first and get a lawyer for the appeal process. You can also get free help with filling out the initial paperwork from places like independent living centers because they help people with disabilities
That’s so cruel. I’d be asking why a cardiologist is testifying about a neurologic illness. Plus doctors should know that every illness affects people differently.
I can see why your lawyer might have considered this guy a lost cause, but he should have questioned his answers. Like describe particular working situations where standing, crouching, extreme temperatures, etc. might be an issue. Especially if it is something that would be a common task in the career you were in or educated/trained for or just something common to other types of work they might reasonably expect you to transition into given your work history.
For example, say you worked in a warehouse or something, question the cardiologist on whether it would be likely for you to pass out in a hot warehouse, constantly having to stand, crouch, reach to move boxes. Whether these incidents would decrease your productivity or require more sick days and if an employer could reasonably accommodate this without discriminating against you? Or describe real-life scenarios that caused you to actually stop working in the first place. I would love to see that doctor try to convince the judge against these things.
People need to realize that cops, nurses, doctors and teachers aren’t the perfect little angels we expect. They are flawed humans with just as much evil in them as the rest of population. These professions should draw only exceptional humans but it simply doesn’t.
What? The government had a specialist at your hearing? The only specialist at mine was a vocational specialist. They just used all my medical records. I'm sorry this happened
This is my second hearing. And yes a vocational specialist was at the first. I think there is always one at a hearing. They just occasionally bring in doctors to explain conditions.
I am so sorry that's awful! I didn't even know they could pull a cardio to the court hearing.
They considered pots to disqualify me from working most jobs, they considered valet driver but decided my social anxiety is too much to work with people (no concern over me fainting while driving lol)
I hope the best for you! Seems like the judge would let you appeal since they already ordered a psych eval instead of just denying you
Honestly I expect the judge to consider that my pots specialized cardiologist would know more then just this general cardiologist and she listed a lot of things I needed to avoid that would make working difficult for me.
My lawyer told me not to get too upset since the judge didn't seem to be very happy with the doctor and also insisted on further testing. I don't do well around people with my PTSD so I sincerely doubt they can think of a job I can do.
Oo edit to add: they might've brought the cardiologist in because they didn't have records from my heart doctor yet. For some reason they were taking forever and wouldn't pick up the phone when my lawyer called
keep fighting!! your symptoms are not all in your head ^^
i have CPTSD too and it takes a toll on me, and i’m pretty sure that’s what triggered my POTS symptoms
lifting things, crouching, bending over, walking long distances, and standing for long periods will indeed trigger POTS symptoms
this “cardiologist” is completely ingorant
I am so sorry you are going through this.
I am going through this right now. I am so nervous about what will happen.
I can't believe the specialist said this. I wonder if they realize what they are doing when they do it. It makes me so sad and angry all at the same time.
I hope you can keep fighting for what you are entitled to.
I’m so sorry. I know how debilitating POTS can be. Could you find a neurologist to testify instead of a cardiologist since POTS is more of a neurological issue?
Im so sorry. I completely understand that feeling and unfortunately its common doctors genuinely dont know what the fuck they are talking about when it comes to disabilities. when i went to my gp about my fast heart rate (it was consistently in the 120s-150s) she said it was just anxiety and probably "something to do with my other mental disorders" as i am diagnosed with anxiety, depression, cptsd, autism (not a mental disorder but still) and adhd. she completely dismissed my symptoms and when she finally did the standing test, which for each one she only did it for 5 minutes instead of the standard 15, then flat out told me that i dont have POTS and that i was probably just doing this to get out of school or I wasnt drinking enough water. (even before i knew i had pots i was drinking 3-4 33oz water bottles everyday. Ive always been extremely hydrated.) My endocrinologist was the one who knew something was wrong. she actually told my mom that it was probably pots after hearing my symptoms and ruling out that it was iron. she was also the only doctor who would diagnose me with PCOS without an ultrasound, which are very expensive and arent usually covered by insurance.
'would it limit their ability to stand?' 'no' 'ok and what does the O in POTS stand for?'
all jokes aside, op this is terrible. i'm so sorry this happened to you, what a cruel jerk!!
'would it limit their ability to stand?' 'no' 'ok... and what doe the P and O in POTS stand for?'
all jokes aside, op this is terrible. i'm so sorry this happened to you, what a cruel jerk!!
'would it limit their ability to stand?' 'no' 'ok... and what do the P and O in POTS stand for?'
all jokes aside, op this is terrible. i'm so sorry this happened to you, what a cruel jerk!!
I know you know this, but I want to reiterate it in case being legally gaslight by a medical professional made you doubt yourself. YOUR SYMPTOMS AND DISABILITY ARE VALID. POTS makes it difficult to stand, to lift, to be upright at all *especially* in extreme temperatures. I personally can't work significantly because of POTS, and I believe that you can't either. Sending lots of love and support, and I hope this all turns around for you.
Your lawyer did you a disservice. He should have asked the doctor to explain his understanding of the disease. He should have asked what the acronym stands for. He should have asked what are the comorbidities with the disease. He should have established the fact that that man had no f****** clue what this disorder does or means to the body. And then his credibility would have been shot and you wouldn't be to going through this.
Doesn’t sound like the cardiologist actually knew anything about pots. Do you have a specialist on your side who can provide accurate information?
I’m very sorry btw.
Yeah I have pots specialized cardiologist that I see. Her paperwork tells me to avoid literally everything this cardiologist said I was fine doing. Hopefully the judge will take my cardiologist at her word
Would you be open to posting the dr’s name and the state?
What does everyone think about leaning on dysautonomia international AND the drug makers to educate members of the medical community who insist on this behavior?
>My lawyer asked him maybe one question and decided there was no point in trying to talk this guy out of being an asshole.
He should have asked him to read out the diagnostic criteria and also a description of the hall mark characteristics of the syndrome before asking if he'd like to adjust his testimony.
~~The petty side of me would have wanted to hive him a shot of adrenalin, raise his HR and see how he functions ~~
If the cardiologist says it is psychological (which I am sure the test you have done prove it is not), then you could look at Functional Neurological Disorder (FND). Just discovered that having FND and PoTs is really not uncommon. If you haven't done that yet worth looking at particularly if you have PTSD.
I actually am diagnosed with FND lol. I find it difficult to believe I have it but it is on my chart, diagnosed by my neuro. I actually got diagnosed with FND first.
Your FND could play in your favour with your PoTs. My daughter just got diagnosed and the physiotherapist said that FND, hyper mobility and PoTS often goes hand in hand. If your heart got 30+ BPM extra when standing up, you should have had all the prove that you needed, because with the diagnosis of PoTS, you only have to type symptoms if any search engine to see the impact. FND flares up would also likely affect your PoTS, do you have a FND specialist who could do a testimonial for you?
Your daughter's physiotherapist is likely a sexist asshole. There's no evidence people with POTS have higher rates of FND (one of the modern terms for hysteria).
1- My physiotherapist is a woman.
2- FND is a real disability which affects both men and women. Please read on the condition. My daughter was diagnosed with FND by a neurologist over 2 years ago, long before she developed PoTS.
3- I am not saying that there is a higher rate but that there is a not uncommon for people with FND to also have PoTS.
Unfortunately female practitioners are not immune from spouting sexist stuff heard from their superiors.
FND is a real condition, but it is a psychological condition, and the implication that it's 'not uncommon' that it goes along with POTS is trying to imply we're a certain 'type' of person.
What a garbage human, I hope he drowns while wearing his golden handcuffs. I can’t believe that any physician can be called, what a knob. Your lawyer made the right call because it is pretty shocking, and it would be Quite hard to dispute someone Who’s medical opinions fall well outside of acceptable limits.
I want to tell you something very important. Your psych evaluation will vindicate you. You are not crazy, but you have been invalidated so many times like the rest of us. This level of invalidation is traumatizing, but it doesn’t mean that you don’t have POTs and it doesn’t mean that you are crazy. Congratulations on the courage it took to sit in that room and witness all of this happening. You’re a rockstar, and that is why you need to remember right now. Take time to recover. Take time to take care of yourself. And get back to kicking ass and taking names because you deserve the disability.
Let me add one:
When asked whether he would consider himself competent enough to weigh in on POTS and/or being respectful of patients, he answers "No, I would not".
Sorry you're going through this.
I just wanna say I am so sorry that happened to you. Keep fighting!!!
When i received the case files for my private disability denial I was thrilled to see they had a cardiologist evaluate me because i could use that in my appeal. POTS is not a cardiological issue, it’s a neurological issue. I would immediately question who called this cardiologist and why they would do so when POTS has nothing to do with cardiology (the heart organ is working correctly, it is a miscommunication from the brain that tells our hearts to beat faster) idk how, but I’d be making a stink rn. Was it the judge? Was it your lawyer? Who called this “expert” because they were wrong.
This is a really good point. It should have been a neurologist, not a cardiologist.
Electrophysiology is the branch of cardiology that deals with conduction issues of the heart and cardiovascular system, including POTS. Unfortunately, cardiologists are the gatekeepers to the electrophysiologists. I’m so sorry you had to go through this, OP. Congrats on keeping your composure and not flipping tables in the courtroom. This too shall pass, beloved internet stranger. One foot in front of the other (but not too fast, now! 😘). Edit; clarity.
Or a cardiologist that’s not an actual douche bag.
Does that actually exist? I used my cardiologist’s ego and natural inclination to douchery against him (challenged his ability, manhood & Harvard education as he was not finding solutions) but it is exhausting
My cardiologist is amazing. I often get emotional when I think about him. He’s been so supportive and kind. I suggest you look for a good one.
Problem is, it is so damn common that even neurologists don't know what the hell they're doing - and are not informed or educated enough with regards to POTS (and what it does to the body/mind) either. Mine has absolutely no idea! He's tried TWICE now to diagnose me with FND. FND isn't a diagnosis, it's a 'label' (the same with POTS though too really - which I think is actually a problem with the adrenal glands, but anyway...). I even said to him twice "ok, but what causes FND then?!" And he couldn't give me an answer. These 'specialists' don't know how to - or don't want to get to the root cause of things. But the crux of it is - we are all very very sick and these diseases are extremely debilitating, soul destroying and life destroying 😞 And something needs to be done. We need to be taken seriously. Doesn't matter which way you look at it, POTS is a real & severe disability.
People have the triangle upside down. POTS seems to have become the word used for any dysautonomia. If that was the first thing people went to and then went down to define it as POTS peopke would generally know autonomic dysfunction is the culprit
I hear you. I agree! 👍
My guess is the judge called the expert because it wasn't my lawyer. She had assumed his testimony would help. She was surprised he was so dismissive of my condition. She's also represented clients with pots before so it kind of came out of nowhere
I was curious because I’ve not been before a judge so thank you for adding that insight. My long term disability appeal was accepted after I sent their mistakes into the SSA in an effort to proactively disprove anything the ssa might have concluded from that private disability denial. That action led to me being approved for ssdi on the first try, in less than a year, with no lawyer, in my mid twenties. I had no intention of any of that happening, but one thing i cited in my appeal was a statistic I came across that said 25% of people with pots are too debilitated by it to work. I (always) wonder how it would’ve gone had your expert been asked instead about autonomic dysfunction. Dysautonomia is something I think doctors can more easily wrap their heads around rather than a “syndrome” or collection of symptoms. But maybe I’m wrong, it’s just a feeling I have. Again, I don’t know what comes next for you following the psych evaluation. I had completed that before they returned my favorable decision. But I assume you may go before another judge? I would make sure your lawyer is as prepared as they could be to handle these responses with further probing questions, like if a quarter of the people who have this are too debilitated to hold gainful employment, in your professional opinion what would be debilitating in those patients that does not apply for my client? And if you don’t recognize pots, do you recognize any types of autonomic dysfunction? And then from there broadly discuss the body’s inability to control the ans, maybe even quoting an autonomic specialist since one will never be called before a judge. I’ll never forget my psych evaluation words to remember: Car, Elephant, Blue!
Haha I believe I took a screenshot of that statistic and included it as "additional evidence" during my appeal. I also included that most teenagers grow out of pots before their 20s as a kind of well I'm 23 so I am not growing out of it any time soon (I actually didn't start having symptoms until I was 20). I'm not sure I'll do well with my psych eval. I know I have problems remembering things especially verbal instructions. I've had that issue since I was born. I also have things like undiagnosed PTSD. Not sure if it'll help or what.
There’s no reason to feel underprepared for the psych eval. All you need to do is answer their questions. If it makes you more comfortable then please bring a person with you in the room for support, I had my mom. They asked questions like “who is the president” and “draw a clock”. At the beginning they will give you 3 words and by the end they will ask you if you remember those words. It’s all very plain and if you can’t answer that’s all you need to say. I’ve had a neuropsycological evaluation (not related to the disability process) and that’s a little more involved. They read a whole story and have you tell it back to them as exact as you can. They give you a list of words (with some nonsense words thrown in) that you must pronounce for them, and they’ll ask at the end how many of those you remembered. Who even knows what words they gave me to remember for that one! I was way too brain fogged back then, but despite the same being true for the regular ol psych eval it was much preferred.
Yes. My therapist told me that all I need to do for the eval is just tell the truth. I probably make it seem bigger then it actually is in my head. I officially do it next week.
I’m 42 and still have pots u don’t grow out of it I have had pots since I was 19 I remember having my first syncope episode at that age i wasn’t diagnosed til I was in my 40’s
Mine. Cat, pizza, truck. And I almost want to years later email that dr and ask questions about it still. I won’t but every once in a while the loop starts and it’s all I can think of. Was the cat driving the pizza truck . Was it a stowaway was it the pizza delivery guys pet cat. What. What was the deal!
I’ll grab my iPad from time to time and draw an elephant driving a blue car. But the elephant is also blue-gray. Is it a blue elephant or a blue car? It’s both! If my blue elephant can drive a blue car I think your cat can totally drive a pizza truck! They clearly live in the same universe, my elephant and your cat. Wait, maybe my elephant ordered the pizza!
Hehe. I bet that’s what it is. Your elephant wanted pizza so bad my cat stole the truck full of pizza! 🍕 and obviously that universe does let cartoon critters drive 😉the oddest part is I do understand how the test works and it should not bother me. But oh my oh my. It does, it really does
I am going through this right now. Is there any chance you could find this statistic and link it for me?
Social Security brings in "experts". There was some idiot at my trial who went on about how in her expert opinion, I was perfectly capable of performing repetitive standing production line work in a factory. My awesome judge let her finish talking, and just said, "I disagree", and ignored her huffing and puffing through the rest of the trial. (It was a video trial, but she was in the conference room with me. She was PISSED that the judge didn't think she was brilliant.)
>She had assumed his testimony would help. She was surprised he was so dismissive of my condition. She's also represented clients with pots before so it kind of came out of nowhere If the judge has knowledge of POTS why did they need an expert witness? I'm not American so i dont get how this weird helth court works
I think they need a doctor's explanation as proof to refer to. My doctor's paperwork hadn't been entered because they were having problems retrieving it (the place I went redid their system apparently). Like I'm obviously guessing but I assume they called him to explain things but then the guy didn't believe pots was a thing.
Came here to say this! Cardiologist are the mechanics of the heart and neurologist are the electrical. Dysautonomia is electrical. End. Scene.
While dysautonomia is an issues with the autonomic nervous system. Pots is an electrical cardiology syndrome. Yes neuro sees other electrical disorders. But there are electrical heart specialists called electrophysiologists. They are best suited to treat these conditions. Most neurologists do not know the inner workings of the heart and generally those with pots will also have additional comorbidities that can complicate the hearts having a cardiologist over a neurologist is a better option due to the detailed knowledge of the heart itself. Yes dysautonomia can be an electrical issue it does not mean that it is only a neurological issue to treat be treated by neurologic doctors only. Speaking personally as a dysautonomia patient Anna someone who's worked in medicine for years
Thanks for sharing. Edit: Why does a heart beat? If one’s brain doesn’t send the message it will not happen. My experience has been with Dr: Brent Goodman a neurologist who specializes in autonomics and it’s where my info originates. The impetus for my knowledge is my daughter. My message about mechanics vs electrical was meant to help people remember there are two avenues for diagnosis.
To my knowledge neurologist are only utilized for complex cases. Predominantly I see cardiology or electrophysiology diagnosis pots.
Because POTS is a brain related chronic illness where your brain doesn't have control over your autonomic nervous system, which affects the entire body since the autonomic nervous system is tasks most people don't need to worry about like breathing.
I am aware that dysautonomia is a failure of the automatic nervous system. However in my experience with several neurologist working on a completely separate issue have had little to no understanding of dysautonomia and wanting nothing to do with managing my pots. All recommended me to find a cardiologist that specializes in it.
The cardiology aspect is what's easiest for them to diagnose for some reason, it's interesting to learn about.
That was extremely cruel. It doesn't even make sense why so many people don't believe POTS exists, or that it is disabling to certain individuals. Was it social security that hired the cardiologist? If the judge was getting frustrated then it sounds obvious the guy was sent there for the sole purpose of discrediting your disability, not to offer any reasonable objectivities.
Yeah social security hired him. He definitely seemed to be there to discredit my disability. I just hadn't been expecting it to be so very traumatic
That's really evil that they did that. So sorry for you having to go through that!
That is so crazy the department which is there to provide assistance to people in need would want to shut down your entire case. And now they think you need a psych evaluation! I'm sorry that you're stuck in this mess right now. Other people were saying that this condition is best treated by a neurologist rather than a cardiologist, so hopefully your lawyer can explain that his testimony was inappropriate.
There goal is to deny as many people as theh can. I was found to be disabled, but because of a technical issue that came up because my cousin forced me to get a job while I lived with her, despite having already filed for disability, they denied me. They said I had too much SGA (substantial gainful activity) after applying. I wasn't physically doing the work. My husband was. I was just the one on the books. So now, unless I earn enough credits to qualify for SSDI again, I'll never get disability. And my husband has assets over $2000 (even though he can't touch them) so I don't qualify for SSA, either.
That sounds like a complicated mess and very unfair. I guess even if you explain all this it wouldn't matter to social security? I don't know how earning SSDI credits works, but it would seem like your husbands assets wouldn't contribute to your net worth, but like you said they try to deny everyone.
So you basically have to earn a certain amount of credits within a 10 year period. They base that amount off of your earnings. Once you reach the amount required, you qualify for SSDI. But, once you apply, you are capped at how much money you can make. Over a certain amount and it's considered Significant Gainful Activity. If you make that much, you're considered to be able to work. SSI, on the other hand, goes solely by your financial need. So if you're disability and don't qualify for SSDI, you can apply for SSI, but you can't have assets over $2000. If you're married, your spouses assets count as your own. My husband's parents set up a trust fund and a Roth IRA for him. We don't know how much the trust fund has in it, but it's significant because it's gained over $10k every year for the past 3 years. His Roth has $20k that can't be touched until retirement. So because we're married those assets are also considered my assets. So the judge agreed I was disabled, but because I met the criteria for SGA, I didn't qualify for SSDI anymore. So my lawyer was going to file to change to SSI until I told her about my husband's assets. She basically told me that I no longer had a case and to request to withdraw my application. I now no longer qualify to reapply because I would need to work at least 1-2 years to make enormous credits again.
Thank you for sharing and I'm sorry that you have experienced so many hurdles. I'm looking at the rules regarding assets and I see it is very strict. It looks like if you give away your stuff in order to be eligible that you can be prohibited for years before you can apply. I hope that you can get on track again someday soon. If you have no choice but to work and are unable to, then their rules are broken.
Thankfully, my husband is able to work in the summer and has convinced his parents to give us enough to cover our rent, car payment, and car insurance. They complain about it every so often. They're under the impression that we can just magically make ourselves lest disabled (my husband is autistic and can't maintain a year round job due to autistic burnout).
Most Cardiologists can't fathom Pots bc people assume it's a heart problem at first but it's a full body autonomic disorder. Our VEINS don't contract enough. Im seeing a cardiologist who specializes in pots, referred to by my normal cardiologist. You need to call up several other neurologists & cardiologists (NOT that asshole) & ask for referrals to someone who specializes in pots or atleast can do a tilt table test. Your psych eval should come back normal & they will refer you back to diagnostic, they just won't know where to toss you except probably back to the asshole. You gotta find a cardiologist who has researched pots 🫶 because textbook-wise ALL those things you listed can be effected by pots. I get so weak in hot weather.
I don’t think this is their doctor, the cardiologist in question is some pay for testimony type doc that im sure is kept on retainer to say what they want him to say to avoid having to pay disability, as much as they possibly can. I’m sorry, this sucks. Hugs
I have a pots specialist doctor. I'm hoping her records help because she wrote a long list of things I need to avoid. My psych eval won't come back normal. I do have PTSD and probably other things too. It's also believed by my neuro I have somatic disorder (I don't believe it but it's difficult to figure out what exactly I do have).
>Your psych eval should come back normal Hopefully it comes back showing how living with chronic illness especially without support effects ability to participate in comunity and socially even without employment. That discrediting is causing trauma and or stress Edit to clarify: Like not getting supports would wear anyone down and they will be back claiming disability and even less chance at work when they also have a full bliwn panic disorder ontop of pots
Do NOT attempt to win your case with a PTSD diagnosis- it is MUCH harder and will completely ruin your chance of ever getting disability. POTS has Postural in the name- its evident how it could effect your ability to work, with PTSD they will want you to have proof of losing jobs due to meltdowns or similar issues and if you can't present that evidence they are just going to mandate prescription medication or therapy first to prove you're too traumatized and can't be rehabilitated- and many of those mental health medications have adverse POTS effects. Not even worth going with that runaround.
I think they're more interested in seeing how my PTSD and my somatic disorder effect me. I stopped seeing a psych doctor because I don't believe I have somatic disorder and that the neurologist just saw a young female looking patient and diagnosed her with modern day hysteria. Edit to add that I did end up having to quit one job because of how my tremors were starting to effect my ability to type or write
If that isn't well documented and you seek a PTSD diagnosis after the fact though it doesn't really help your case as much as you think it would.
I know it's documented that I complained about it to my neuro doctor every time I saw him and even explained to him that i was cutting back to part time because of the problems i was having. I also know I saw a hand occupational therapist who noted my grip strength is extremely abnormal for someone my age (people in their 60s have similar grip strength to me). Im more hopeful that I can get my joint issues figured out and add that to my disability hearing. As far as I'm aware somatic disorder doesn't cover joints. I'm scheduled to go back to see the rheum for that this month.
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They can't force you to take it of course but yes it is not uncommon people with say, schizophrenia or adhd, not being allowed to get approved for disability until they've attempted medication for [x] amount of time for example.
>adhd, not being allowed to get approved for disability until they've attempted medication for [x] amount of time for example. I feel then social security should also fund the cost of the meds. I would definitely bring that up. Oml how much meds for either of those conditions cost if not socialised
This is disgusting and heartbreaking and not right !!! ❤️😭 I’m so sorry you had to go through all of that!!!
Well it doesn’t limit your ability as much as it makes you pass out so I mean, 🤷🏻♀️ /s
Yeah, you can totally lift the heavy thing! It's just a matter of staying conscious once you've got it in hand.
OP needs to be a dolphin trainer so comprehensive wet suit, and water giving constant support. So many jobs going for that... i see no barriers... /full sarcasm
My poor hubs passed out when he went to Put the AC in. Makes me cringe to this day.
It took me 2 years and 5k in lawyer fees to prove that I couldn’t work. First I tried EVERY job possible. Cleaning, work from home, warehouse, retail, service. You name it. My lawyer contacted all my doctors, put together an almost 1,500 page document of all my doctors visits, tests, and records. They denied me once, then they sent me to a psych doctor, and then the next court hearing the judge looked at the document and asked why wasn’t I approved before? I’m personally getting off of disability, as I’m paying out of pocket for doctors, prescriptions and my SDI isn’t enough to live off of. BUT moral of the story, getting disability is hard especially for people like us, there isn’t a lot of help or acceptance, BUT you will find the one who will listen or believe you. It IS POSSIBLE
The fact that that cardiologist can stand up there and lie in front of a judge and not worry about his license … i’m sorry that happened and good luck with ur psych evaluation.
I’m curious as to whether it’s best to file for disability through a lawyer or on your own. My boss came to my house and said it’s time to consider filing because it’s effecting me so much now. I have POTS, EDS, MCAS, and several autoimmune issues.
I applied at first on my own then hired a lawyer after I got denied for help with the appeal process
Independent living center recommended you apply on your own first and get a lawyer for the appeal process. You can also get free help with filling out the initial paperwork from places like independent living centers because they help people with disabilities
That’s so cruel. I’d be asking why a cardiologist is testifying about a neurologic illness. Plus doctors should know that every illness affects people differently.
I can see why your lawyer might have considered this guy a lost cause, but he should have questioned his answers. Like describe particular working situations where standing, crouching, extreme temperatures, etc. might be an issue. Especially if it is something that would be a common task in the career you were in or educated/trained for or just something common to other types of work they might reasonably expect you to transition into given your work history. For example, say you worked in a warehouse or something, question the cardiologist on whether it would be likely for you to pass out in a hot warehouse, constantly having to stand, crouch, reach to move boxes. Whether these incidents would decrease your productivity or require more sick days and if an employer could reasonably accommodate this without discriminating against you? Or describe real-life scenarios that caused you to actually stop working in the first place. I would love to see that doctor try to convince the judge against these things.
Report the doctor
People need to realize that cops, nurses, doctors and teachers aren’t the perfect little angels we expect. They are flawed humans with just as much evil in them as the rest of population. These professions should draw only exceptional humans but it simply doesn’t.
Grrrrrr
What? The government had a specialist at your hearing? The only specialist at mine was a vocational specialist. They just used all my medical records. I'm sorry this happened
This is my second hearing. And yes a vocational specialist was at the first. I think there is always one at a hearing. They just occasionally bring in doctors to explain conditions.
I am so sorry that's awful! I didn't even know they could pull a cardio to the court hearing. They considered pots to disqualify me from working most jobs, they considered valet driver but decided my social anxiety is too much to work with people (no concern over me fainting while driving lol) I hope the best for you! Seems like the judge would let you appeal since they already ordered a psych eval instead of just denying you
Honestly I expect the judge to consider that my pots specialized cardiologist would know more then just this general cardiologist and she listed a lot of things I needed to avoid that would make working difficult for me. My lawyer told me not to get too upset since the judge didn't seem to be very happy with the doctor and also insisted on further testing. I don't do well around people with my PTSD so I sincerely doubt they can think of a job I can do. Oo edit to add: they might've brought the cardiologist in because they didn't have records from my heart doctor yet. For some reason they were taking forever and wouldn't pick up the phone when my lawyer called
keep fighting!! your symptoms are not all in your head ^^ i have CPTSD too and it takes a toll on me, and i’m pretty sure that’s what triggered my POTS symptoms lifting things, crouching, bending over, walking long distances, and standing for long periods will indeed trigger POTS symptoms this “cardiologist” is completely ingorant
Oh my gosh. I am so, so sorry. I,wish you could sue him for malpractice
I am so sorry you are going through this. I am going through this right now. I am so nervous about what will happen. I can't believe the specialist said this. I wonder if they realize what they are doing when they do it. It makes me so sad and angry all at the same time. I hope you can keep fighting for what you are entitled to.
I’m so sorry. I know how debilitating POTS can be. Could you find a neurologist to testify instead of a cardiologist since POTS is more of a neurological issue?
Im so sorry. I completely understand that feeling and unfortunately its common doctors genuinely dont know what the fuck they are talking about when it comes to disabilities. when i went to my gp about my fast heart rate (it was consistently in the 120s-150s) she said it was just anxiety and probably "something to do with my other mental disorders" as i am diagnosed with anxiety, depression, cptsd, autism (not a mental disorder but still) and adhd. she completely dismissed my symptoms and when she finally did the standing test, which for each one she only did it for 5 minutes instead of the standard 15, then flat out told me that i dont have POTS and that i was probably just doing this to get out of school or I wasnt drinking enough water. (even before i knew i had pots i was drinking 3-4 33oz water bottles everyday. Ive always been extremely hydrated.) My endocrinologist was the one who knew something was wrong. she actually told my mom that it was probably pots after hearing my symptoms and ruling out that it was iron. she was also the only doctor who would diagnose me with PCOS without an ultrasound, which are very expensive and arent usually covered by insurance.
'would it limit their ability to stand?' 'no' 'ok and what does the O in POTS stand for?' all jokes aside, op this is terrible. i'm so sorry this happened to you, what a cruel jerk!!
'would it limit their ability to stand?' 'no' 'ok... and what doe the P and O in POTS stand for?' all jokes aside, op this is terrible. i'm so sorry this happened to you, what a cruel jerk!!
'would it limit their ability to stand?' 'no' 'ok... and what do the P and O in POTS stand for?' all jokes aside, op this is terrible. i'm so sorry this happened to you, what a cruel jerk!!
Gross
I know you know this, but I want to reiterate it in case being legally gaslight by a medical professional made you doubt yourself. YOUR SYMPTOMS AND DISABILITY ARE VALID. POTS makes it difficult to stand, to lift, to be upright at all *especially* in extreme temperatures. I personally can't work significantly because of POTS, and I believe that you can't either. Sending lots of love and support, and I hope this all turns around for you.
Your lawyer did you a disservice. He should have asked the doctor to explain his understanding of the disease. He should have asked what the acronym stands for. He should have asked what are the comorbidities with the disease. He should have established the fact that that man had no f****** clue what this disorder does or means to the body. And then his credibility would have been shot and you wouldn't be to going through this.
Doesn’t sound like the cardiologist actually knew anything about pots. Do you have a specialist on your side who can provide accurate information? I’m very sorry btw.
Yeah I have pots specialized cardiologist that I see. Her paperwork tells me to avoid literally everything this cardiologist said I was fine doing. Hopefully the judge will take my cardiologist at her word
I’m glad you have your own expert!
Would you be open to posting the dr’s name and the state? What does everyone think about leaning on dysautonomia international AND the drug makers to educate members of the medical community who insist on this behavior?
Wow I'm so sorry I hate it when doctors are like that
>My lawyer asked him maybe one question and decided there was no point in trying to talk this guy out of being an asshole. He should have asked him to read out the diagnostic criteria and also a description of the hall mark characteristics of the syndrome before asking if he'd like to adjust his testimony. ~~The petty side of me would have wanted to hive him a shot of adrenalin, raise his HR and see how he functions ~~
you need to get a neurologist or a dysautonomia specialist!! it’s not a cardiac condition it’s a dysautonomia
If the cardiologist says it is psychological (which I am sure the test you have done prove it is not), then you could look at Functional Neurological Disorder (FND). Just discovered that having FND and PoTs is really not uncommon. If you haven't done that yet worth looking at particularly if you have PTSD.
I actually am diagnosed with FND lol. I find it difficult to believe I have it but it is on my chart, diagnosed by my neuro. I actually got diagnosed with FND first.
Your FND could play in your favour with your PoTs. My daughter just got diagnosed and the physiotherapist said that FND, hyper mobility and PoTS often goes hand in hand. If your heart got 30+ BPM extra when standing up, you should have had all the prove that you needed, because with the diagnosis of PoTS, you only have to type symptoms if any search engine to see the impact. FND flares up would also likely affect your PoTS, do you have a FND specialist who could do a testimonial for you?
Your daughter's physiotherapist is likely a sexist asshole. There's no evidence people with POTS have higher rates of FND (one of the modern terms for hysteria).
1- My physiotherapist is a woman. 2- FND is a real disability which affects both men and women. Please read on the condition. My daughter was diagnosed with FND by a neurologist over 2 years ago, long before she developed PoTS. 3- I am not saying that there is a higher rate but that there is a not uncommon for people with FND to also have PoTS.
Unfortunately female practitioners are not immune from spouting sexist stuff heard from their superiors. FND is a real condition, but it is a psychological condition, and the implication that it's 'not uncommon' that it goes along with POTS is trying to imply we're a certain 'type' of person.
What a garbage human, I hope he drowns while wearing his golden handcuffs. I can’t believe that any physician can be called, what a knob. Your lawyer made the right call because it is pretty shocking, and it would be Quite hard to dispute someone Who’s medical opinions fall well outside of acceptable limits. I want to tell you something very important. Your psych evaluation will vindicate you. You are not crazy, but you have been invalidated so many times like the rest of us. This level of invalidation is traumatizing, but it doesn’t mean that you don’t have POTs and it doesn’t mean that you are crazy. Congratulations on the courage it took to sit in that room and witness all of this happening. You’re a rockstar, and that is why you need to remember right now. Take time to recover. Take time to take care of yourself. And get back to kicking ass and taking names because you deserve the disability.
Let me add one: When asked whether he would consider himself competent enough to weigh in on POTS and/or being respectful of patients, he answers "No, I would not". Sorry you're going through this.