Campus Life

Harder than MIT

Living with postural orthostatic tachycardia syndrome

I am an MIT alum, and I suffer from POTS (postural orthostatic tachycardia syndrome). Before reading about the tragic news of MIT student Christina E. Tournant’s death, most of you had probably never heard of POTS. Most of the doctors that I have seen have also never heard of POTS. However, more people have POTS than multiple sclerosis (MS) or amyotrophic lateral sclerosis (ALS). Experts estimate that POTS impacts one to three million Americans, 85 percent of whom are female.

POTS is an autonomic nervous system disorder. Doctors do not fully understand its causes, and there is currently no cure. When you have POTS the bodily systems that involuntary manage heart rate, blood pressure, sweating, digestion and urination don’t work properly. The hallmark symptom of POTS is a rapid heart rate upon standing that resolves when you lay down. When I first developed POTS, I couldn’t get out of bed without having my heart rate skyrocket to over 140 beats per minute (bpm). Now, with my symptoms under control, my typical standing heart rate is around 100 bpm. Imagine feeling like you are running a marathon, all the time, every day of your life. It’s exhausting. Not to mention the nausea, dizziness, heat intolerance, sweating, insomnia and difficulty concentrating that I also endure.

Today people with POTS suffer in frustration. Most doctors don’t know how to diagnose us; the average diagnostic delay is six years. Uninformed doctors tell us we must be crazy or stressed. When we do finally get diagnosed, there are limited treatment options. The most broadly agreed upon treatment is exercise, plenty of water and a very high-salt diet. We experiment on ourselves by altering our diet, trying new exercises, bouncing from medication to medication, sometimes even grasping at straws that worked for some POTS patients we met on Facebook. Externally, we do not look sick; dealing with the stigma of using a wheelchair or handicapped sticker can thus be awkward.

When my POTS symptoms first appeared, I went from working a full-time job, playing soccer after work and hiking on the weekends, to bedridden in a matter of days. I spent two weeks at two different Boston hospitals where I underwent every test imaginable. I was released from the hospital far too sick to care for myself and forced to live with my parents for almost a year. When I finally returned to living on my own, my days revolved around showering, preparing meals and physical therapy. It was simply too exhausting to handle anything else.

Progress is painfully slow. Even now, four years later, I am tested everyday physically, emotionally and mentally. My energy has to be managed carefully, which means if I need to run errands today I probably won’t be able to cook dinner tonight. I was once a typical MIT student. I did everything, and I did it passionately. I played on the soccer and basketball teams. I was a UA for 2.007. I stayed up late studying. And I went to Pour House, a burger joint on Boston, on the weekends. I can’t imagine dealing with the rigors of MIT while managing my health. MIT was incredibly hard, but having POTS has been the biggest challenge of my life.

Part of my fight against POTS has been to raise awareness and research funds. I started doing a walk every year with my family and friends to raise money for POTS research and to keep myself motivated during physical therapy. This year I am very excited to be planning a POTS Walk and 5K race that is open to the public. In this small way I feel control over my illness, because I can contribute to fixing the bigger problem. I will be dedicating this year’s POTS Walk and 5K race to Christina Tournant.

As an engineer, MIT taught me how to fix things that are broken. It is infuriating to know that there is no way to completely fix my broken body. I am the model patient; I follow every doctor recommendation, participate in POTS research studies, experiment with new medications and work religiously at physical therapy. But the reality is, my life will never be the same. I will probably never play soccer again. I might never work a full-time job again, and I will be on some form of medication for the rest of my life. That reality makes me sad. But MIT also taught me how to persevere. I might not be the exact same person anymore, but my tenacity still remains.

Sarah Mendelowitz is a member of the Class of 2003, graduating with an SB in mechanical engineering in 2003 and an SM in mechanical engineering in 2005.

16 Comments
1
marianne steen over 3 years ago

Hi Sarah, It sounds like you life has been taken hostage like my daughter Kates My Kate has systemic chronic lyme disease. In fact we thought she would die of it untill recently. When a married couple both doctors contacted us and said they think they could help Kate(They saw her story on line).She was tested by Computerized Electo-Dermal Stress Analysis CEDSA. Please consider the possibilty of lyme being the underline cause of your symptoms,it has 11 strains, is mechanized and mutates,it is becoming known for mimicking other diseases. Lyme bacteria needs to be tested in the cell. Its a bacteria that acts like a parasite. I wouldnt be writing if we hadnt been contacted by these doctors who understand what lyme is capable of. Results talk. The treatment is tru-rife which uses vibration without destructive heat. No side effects either. This is tru-rife, we now have a tru-rife machine and Kate can now treat herself at home. It kills the lyme bacteria , co-infections and parasites. Then drainage. Also she is at the same time building her body up. It could take a year to be cured. I know what its like for well meaning people to have an opinion. I just had to share this with you after hearing about your illness. PS The technology is from the scientist Royal Raymond Rife who invented it. Sincerely Marianne Steen

2
Vidal over 3 years ago

Hi Sarah I recently got diagnosed with POTS and in less than a week went from working and coming home to play with my 3 and 5 years old kids to be in bed feeling like im drunk and sick. Its frustrating wben doctors tells you that you have anxiety or panic attacks just because they can understand whats wrong for months. How do you manage your condition im just tired of wasting my time with doctors that just want to tread the symptoms and dont even care to find out whats the cause. I always thought that doctors would do anything to figure it out the cause but im so disappointed. At least now i know everybody in the Emergency Department by name. Please any advice to make me feel better would be great. Thanks glad that you are able to get some of your life back. Hopefully I'll be outside soon enjoying my kids l8ke i used too. Thanks

3
Sarah over 3 years ago

Marianne, Thanks for the suggestion but I've been tested for Lyme a couple times and its always come back negative. I'm glad your daughter has found the cause of her problems and I wish her luck with her treatment.

Vidal, I'm sorry to hear you have POTS as well. My best advice is patience. Not everyone can find an underlying cause, including myself. You have to be willing to experiment with different treatments and find a doctor that's willing to help you do so. There are bad doctors just like there are bad engineers. If you can get on the list to see a POTS specialist I would recommend it, they can at least start you in the right direction. Remember even the specialists haven't figured everything out about POTS so you might not always get a good answer. Also exercise is really important and extremely helpful for me. I started very slowly just doing exercises in bed and worked up from there. It's very hard, because it makes you feel worse and it takes a long time to see progress but in the long run it really helps. I've also experimented with a bunch of medications and those tend to be specific person to person, so just try them and find what works for you. And keep a positive outlook, things really do get better, it is slow and frustrating, but unfortunately there is no short term fix. Good luck!!

4
Hope over 3 years ago

wow, I run 120 bpm resting supine... and, running errands?? even if I didn't have a host of other illnesses and injuries, POTS alone makes me lose consciousness up to 50 times a day! I'm in danger any time I'm not resting in the center of my bed...

however, to liken POTS to MS and especially ALS is way off the mark... so much so that I'm an active supporter of motor neuron disease research, and would not waste my precious little energy on POTS advocacy when 2-year-olds are only surviving Spinal Muscular Atrophy (juvenile ALS) on trachs and ventilators and can't even use their smiling muscles...

I've always been perturbed by celebrities who do not care to champion a cause until it is for their own personal benefit. where are the Brian Boitanos of Hollywood who devote their energy to children's incurable disease advocacy?

let those kids get a chance at MIT, then we can start corraling resources for conditions that are inconvenient, like this person's whose POTS (which is, btw, treatable with many different drug and therapy combinations) is relatively minor and doesn't glue her to a bed, or a breathing machine...

5
Valerie over 3 years ago

Hope, no matter what one suffers from, there is always someone out there with something worse. To minimize what Sarah and other POTS patients suffer through, is heartless. And btw, POTS is not always successfully treated with drugs/therapy. It's much more than an inconvenience. There is also very frequently a comorbidity with other diseases.

6
Janice over 3 years ago

Thank you so much for writing this incredible article. There are millions of young people suffering from this terrible illness, and doctors who can recognize or attempt to properly treat it are few and far between. Many are shuffled from doctor to doctor and accused of laziness by their loved ones or mis diagnosed with anxiety while their health downwardly spirals without proper attention. Thank you for explaining the difficulty of living with POTS in such a clear way. I am personally thrilled that MS, which touches the lives of 400,000 Americans receives $100 million annually for research, but I am appalled that POTS, which affects somewhere around a million or more Americans recieves only one million, hence the lack of awareness for proper diagnosis, evaluation and management. There is not one drug that has been specifically created for POTS, and most POTS patients are as different from each other as snowflakes are, making each case very complicated and outside of the scope of a standard 15 minute appt. Doctors who treat POTS have compared it's functional impairment to that of Congestive Heart Failure or COPD. It is estimated that 25 of POTS patients are completely disabled. I don't quite understand the comments referring to POTS as just an inconvenience managed well by drugs. Either that was written by someone with zero knowledge of this terrible illness and the extreme difficulty the majority have in getting even a proper diagnosis, let alone having access to a doctor who knows anything about treating it, or has had a mild case herself and was blessed with getting her symptoms under control and has no mercy for the many who are debilitated by it, and don't even know what they have. God Bless you Sandra for all your efforts of spreading POTS awareness! For those of us who have experienced the devastation of POTS either first hand or with a loved one, we all must stand together and demand that it gets proper attention and research funding!!

7
Janice over 3 years ago

Correction: 25 of POTS patients are said to be completely disabled, (NOT 25)

8
Janice over 3 years ago

Goodness- hard to make a correction here! I guess this form doesn't recognize the percent symbol. Ok folks- I meant "25 percent", not "25".

9
Jennifer over 3 years ago

Thank you for this article. My Daughter has POTS and articles like this one help us to explain to family and friends what it is she goes through.

10
Cat Burger over 3 years ago

To those who are making statements regarding the person's post that said: "to liken POTS to MS and especially ALS is way off the mark.." Please re-read the article, it never said that. What this article did say was: "more people have POTS than multiple sclerosis (MS) or amyotrophic lateral sclerosis (ALS)." and yet most doctors don't know what POTS is or they have even never heard of it. come on people, this is not a competition as to whose illness is the worst.

11
Lindy over 3 years ago

Is anyone aware if there is any research in regards to the number of people who are high achievers being diagnosed with POTS compared to the general population.

12
Sean Peterson over 3 years ago

Hi Sarah,

I developed POTS while in college - with all of the 'typical' (I hesitate to say this, as the term doesn't really apply to POTS) symptoms - postural tachycardia, flushing, tiredness, and a gang of others. I ultimately ended up dropping out of school for the excessive tiredness I developed.

My recovery came through the form of exercise. But not just blind exercise, I should note. I focused on leg strength in particular. Prior to developing POTS I participated in sports/intramurals and worked out on a regular basis - so beginning a regimen that was very beginner was new to me - but ultimately was what I attribute my recovery to. Some research has since been done on the effects that exercise has on POTS by Dr. Levine in Texas - a quick google search should uncover some of it or tips on how to perform the exercise. The idea is to move from recumbent exercises to ones standing upright. The thought is that exercise retrains the body and somehow aids the neural system in recovery - though the methods through which this is accmplished are not yet understood (to my understanding...). Again, this points to the lack of research going on surrounding POTS, as has been stated above.

Best of luck in your potential recovery - exercise, exercise, exercise. If not on a bike, perhaps starting in a pool to offset the effects of gravity. I am a strong advocate of exercise for this condition - it helped me regain function, return to school, and graduate. I'm not saying that exercise will help every patient - but it certainly helped me.

13
Allison Wallis over 3 years ago

I encourage anyone who has POTS or POTS symptoms to see a geneticist to be screened for Ehlers-Danlos Syndrome. It is a rarely diagnosed, genetic collagen disorder. Studies vary, but many doctors think roughly 1/3 of POTS patients have undiagnosed EDS. You can read more at ednf.org. It took me 32 years to get my EDS diagnosis- since then, with better treatment and medication more suited to my conditions, I'm out of my wheelchair and raising my child again. Thanks for this article- it's a great explanation of what POTS does to a person.

14
Herms '87 over 3 years ago

1, 2, 4, 6, 12, 13--

From "Postural Tachycardia Syndrome," version 7.0, in UpToDate (Wolters Kluwer Health, March 3, 2015):

Epidemiology [occurrence]

It is estimated that 500,000 Americans suffer from this disorder....

Etiology [cause]

Distal denervation [loss of nerve supply] -- An underlying autonomic neuropathy ... may be postviral or immune-mediated in origin.... Many cases originate after systemic infection....

Increased sympathetic [adrenaline-activated] activity -- Increased sympathetic activity is the final common pathway of most proposed mechanisms in POTS....

Associated disorders -- Mast-cell activation [immediate-hypersensitivity] abnormalities (e.g., episodes of flushing ...) have also been noted in some patients....

POTS has also been associated with Ehlers-Danlos syndrome....

Clinical Features

Patients with postural tachycardia syndrome report dizziness, lightheadedness, weakness, blurred vision, and fatigue upon standing. Other predominantly orthostatic [posture-related] symptoms include palpitations, tremulousness [trembling], and anxiety. Gastrointestinal symptoms such as nausea ... may be particularly problematic in some.... [Fainting happens] relatively [infrequently], but does occur in about 40 percent of patients....

The symptoms may appear abruptly, often after a viral illness.... Some patients experience only mild symptoms.... Others are profoundly incapacitated....

Treatment

Nonpharmacologic measures -- ... Dehydration and inactivity should be avoided.

Some clinicians advocate that exercise training should have a central role in treatment of POTS. In one study ... patients in the group randomized to a jogging program were less likely to have residual symptoms after three months compared with controls (37 versus 91 percent)....

Medications -- Fludrocortisone is most effective when combined with increased salt and water intake....

Adrenoreceptor agonists may be helpful in some patients....

Preliminary evidence suggests that the acetylcholinesterase inhibitor pyridostigmine may attenuate the tachycardia and improve symptoms....

Prognosis [prospect of survival and recovery]

Most patients with POTS have a favorable prognosis. In one case series of 58 patients, most had improved symptoms at one-year followup and more than one-third no longer met diagnostic criteria for POTS.

15
J over 3 years ago

Sarah thanks for writing this...it's the closest I could relate to a POTS story. Just after I graduated from Wellesley College I was diagnosed with POTS and had to take what I thought would be a one semester leave of absence (now 4 semesters and counting) from grad school. Was diligent with meds/exercise/etc, had dozens of tests done, saw specialists across the country and today still struggle with basic cognitive/physical tasks even though I've definitely made progress. Worst fear is being dependent forever. But I haven't given up yet and reading stories like yours is encouraging and helps me keep going. Thanks for bringing awareness to POTS. Though I wouldn't wish this experience on anyone, only people who have POTS truly understand the emotional pain of living with it.

16
Alex over 3 years ago

Sarah thank you so much for sharing this. I was recently diagnosed with POTS after going through millions of tests that all came back normal. Before my POTS I was extremely active, playing sports, working out almost every day, and to go from that to bedridden and feeling like I am going to faint every time I even get up to walk to the bathroom has been a nightmare. I thought I was crazy. Sometimes I still do. I'm trying to graduate with my masters this semester and it has been an uphill battle all the way. I really appreciate your article and having it help explain to others what is happening to me. I admire your perseverance and I hope on my extra bad days (because honestly there is no such thing as a good day health wise for me at this stage of my fight with POTS) that I can remember your story and the story of others and keep fighting to get through. Thank you.