Postural Orthostatic Tachycardia Syndrome or POTS is a disorder of the autonomic nervous system (dysautonomia) whereby your blood pools in your lower body when you try to stand up. Your heart begins to beat rapidly in response to reduced blood flow to brain and your blood pressure drops.
When a POTS patient attempts to stand up, she will begin to feel faint and may, in fact, pass out. In more severe cases, a POTS patient will be unable to stand up for more than 10 to 15 minutes at a time, and must spend most of her day in a reclined position so that gravity will help blood flow to all parts of the body.
Often POTS is associated with a connective tissue disorder called Ehlers-Danlos syndrome. Ehlers-Danlos patients have hypermobile joints and are susceptible to joint dislocations and disc herniations.
POTS patients are often encouraged by their doctors to drink large volumes of water and a high salt diet to increase blood volume. This, of course, results in the need for frequent urination.
POTS patients often have difficulty with food digestion since this autonomic activity requires increased blood flow to the stomach and intestines..
How to Argue that POTS is Disabling for Social Security Disability Purposes
Social Security defines disability in terms of how your medical condition or conditions prevent you from reliably performing full time work. Your must have a diagnosed (“medically determinable” condition that has lasted or is expected to last 12 consecutive months or result in death.
Most importantly, your condition must prevent you from performing the duties of a simple, entry-level job. It is not enough that you cannot perform your past work – you have to prove that you cannot reliable perform any job at all.
Your chances of winning go up if you focus on specific work limitations that impact your reliability. In the case of POTS, common work activity limitations include:
- unable to stand and walk for more than 10 to 20 minutes at a time
- unable to stand and walk for more than 60 to 90 minutes total in a day
- unable to perform jobs at unprotected heights, near dangerous machinery
- unable to climb ladders, ropes and scaffolds
- minimal capacity to lift and carry
- need to take unscheduled breaks to lie down
- need to take unscheduled breaks to urinate
- joint pain (also associated with Ehlers-Danlos)
- limited exercise tolerance because of potential strain on the heart
Because POTS is a rare condition, most patients seek treatment with a cardiologist who has knowledge about POTS and its treatment. For example, Vanderbilt University in Tennessee has a well known Autonomic Dsyfunction Center (link).
If your POTS specialist is willing to complete a functional capacity evaluation detailing work reliability limitations, you can greatly improve your chances at convincing a Social Security judge that despite your best efforts you simply cannot work at any job.
Choosing the Right Theory of Disability
As discussed elsewhere on this website, there are three “theories of disability” you can use to argue your case to SSA, and eventually to an administrative law judge.
The “listing” argument does not apply in POTS cases as there is no listing for this condition. Of course, you may meet or equal a listing for another medical issue but currently SSA does not include POTS in its Blue Book of Impairments
The “grid rule” argument could possibly apply in POTS cases since POTS patients will have exertional limitations. I have not seen a case where a disability judge relied on a grid rule to approve a POTS case but, in theory, there is no reason why a judge would not use the grids.
The “functional capacity” argument is the most common theory of disability that Social Security judges use in POTS cases. Under this theory we argue that the combination of the claimant’s symptoms, medication side effects and associated symptoms (like frequent unscheduled breaks due to excessive urination) so erode the claimant’s capacity to reliably function that no employer would accommodate that person.
Keep in mind that you are not limited to one argument for disability in your SSD case. You can argue that you are disabled due to POTS under both a grid theory and a functional capacity theory, and that you are disabled under a listing theory due to recurrent disc herniations from the Ehlers-Danlos and under a functional capacity theory due to Ehlers-Danlos.
What Medical Records Will You Need
Social Security decision-makers – both adjudicators and judges – are putting increasing reliance on consistent medical treatment. If you were been diagnosed with POTS three years ago, but you have never seen a specialist and you only see your family doctor once a year, you will have an uphill battle.
By contrast if your family doctor is serving as the “quarterback” for your medical treatment, and you are seeing specialists for various symptoms, and both the family doctor and the specialist will complete functional capacity evaluations setting out significant activity limitations, your chances of winning increase dramatically.
I also advise my clients to keep a diary of medication side effects such as nausea, fatigue, excessive thirst, excessive urination and cognitive decline. This evidence will also help.
How to Prepare for Your Hearing
Because POTS is not a listing level impairment and it is one that is somewhat uncommon, it is very likely that SSA will deny your claim at the initial application stage and at the reconsideration appeal. While discouraging do not give up if you are denied.
Social Security adjudicators are like insurance claims adjusters. They have very specific guidelines that they must work within in order to process approvals. My experience has been that you are unlikely to be approved at initial or recon unless your condition is at listing level or something close to that.
Because there is no listing for POTS, it is unlikely that an adjudicator would approve your claim.
By contrast, Social Security’s administrative law judges have the authority to look beyond the listings and consider your claim holistically. If you think about it, a functional capacity evaluation is a holistic review of your claim for disability. The judge is looking at your symptoms, medication side effects, your age, your education and every factor imaginable that would impact your capacity for work.
However, because POTS is somewhat rare, it is usually a good idea to think about how you might educate your judge as you prepare for your hearing.
A pre-hearing brief written by your lawyer can be a useful tool. Your testimony can be another way to educate the judge, especially if you understand how POTS impacts your body and you can explain its effects in terms of how you are impacted.
As you practice with your lawyer answering questions about your symptoms, keep in mind that the judge will be less interested in the details and history of your diagnosis, and more interested in the practical impact of your symptoms.
Ask yourself: why does your POTS and my other medical conditions leave me without the capacity to be reliable at a job? Remember that the judge will use a vocational witness at your hearing to “translate” the medical record into work limitations so the more practical issues you can raise the better.
Conclusion: my experience has been that claimants struggling with POTS and associated conditions like Ehlers-Danlos have very solid claims and good opportunities for SSD approvals. Remember that because you live with your symptoms you may not realize just how significant they are in the context of working at an entry-level job.
This condition will most likely require some level of education for the judge and clear testimony from you about your day to day struggles with your symptoms.
POTS Case Study #1 – 43 year old female with work background as an executive for a real estate company alleges disability based on POTS and Ehlers Danlos.