Stories page 9

POTS Recovery

by Kerk
August 2006

I’m writing this to provide some hope to POTS sufferers; POTS can be overcome.  Complete recovery and resumption of all pre-POTS activities is possible. It may take a while, and it’s not fun, but you can come back strong.  I had POTS several years ago and recall how all the internet info I found was demoralizing; all accounts ended with ineffectual medications, patronizing doctors, and borderline functionality.  So here is a long, gloomy POTS story with a happy ending.

In March of 2000, at the age of 29, I caught a “cold” and experienced some chest congestion.  Shortly thereafter, while in Costa Rica, I became aware of frequent heart palpitations. Over the next month, I saw numerous doctors who all concluded that I had a benign ventricular arrhythmia.  I took the entire array of diagnostic cardiac tests: EKGs, Holter monitors, thyroid tests, treadmill stress tests, an echocardiogram, a thallium profusion test, and an angiogram.  All these tests resulted in a diagnosis of a normal, healthy heart with slight MVP (Mitral Valve Prolapse) and this harmless arrhythmia (mostly PVCs- Premature Ventricular Complexes). My heart, arteries, and circulatory system were structurally sound; there was no evidence of underlying heart disease, plaque or blocked arteries, etc.  I also had a complete physical exam with all normal results.  Yet my crazy arrhythmia persisted.  (I had an average of 200+ PVCs/PACs per hour and, at the worst, as many as 400+ per hour.)  I was told I had a “strong, healthy heart…It’s nothing to worry about.”  I was also told to “ignore my problem, and it will go away on its own.”  I began to notice that I had an abnormally high heart rate which seemed strange as I had never had it before.  The doctor said not to worry, that I “just run at a higher rpm than most…Come back in 6 months.”  So with a medical stamp of approval, I returned to normal life and tried to put it all behind me.  But I didn’t feel better.  The arrhythmia was as bad and annoying as ever.   Finally, after 4 months of no abatement of the arrhythmia, as well as an increasingly elevated and highly fluctuating heart rate, I decided to get a second opinion.

The second doctor reviewed the records, performed another echocardiogram, a treadmill stress test, and then concurred with the previous diagnosis of healthy heart with a benign arrhythmia.  He tried various drugs (Toprol, Rhythmol) to see if we could minimize it. (The Rhythmol worked well initially, but after a few weeks, it lost its efficacy even at higher doses.)  As for the elevated heart rate, it was discounted because it was normal whenever they took my pulse (sitting down).

Holter monitors showed that my heart rate varied greatly from sinus bradycardia at rest (below 39 bpm) to 120-140+ bpm with light activity.  This elevated rate was present the majority of the time but not always, and it did not seem to correlate directly to physical exertion.  I’d wake up in the morning and supine it would be 50 bpm, and just standing up out of bed, it would increase to 100 bpm or more as my baseline heart rate.  Finally, during one office visit, I made the nurse check my pulse after I stood up, which showed a significant increase from my pulse in a sitting posture.  (My pulse went from 65 sitting to 95 by simply standing up.)  Her eyes bugged out, and she said that was definitely not normal and that she would put it in the record.  The doctor could offer no explanation; “Very interesting” was all I got.  Additionally, my pulse was quite erratic.  It would suddenly surge and ebb, (not in relation to breathing), and it seemed to “stagger and stumble,” not maintaining any sort of consistency.  I found this as disconcerting and as bothersome as the palpitations.  Between these symptoms and the ectopics, my heart beat with the consistency and regularity of a pinball.  After several more months, I consulted with an electrophysiologist who was confident that he could “cure” my arrhythmia.  It had gotten to the point where the arrhythmia was unbearable, so I decided to undergo an EP test with Radio Frequency Ablation in January of 2001.  Unfortunately, under sedation my ectopics pretty much disappeared, only to return unabated after the procedure. 

Following that procedure, I decided to stop fooling around and began an aggressive, proactive, letter-writing and research campaign.  I obtained all my medical records and started pouring over them.  I got a book on EKGs and learned how to read them.  I wrote dozens of letters to cardiac specialists outlining my 3 main symptoms: palpitations, a highly fluctuating and elevated heart rate, and chest pain.  The ectopics were both PVCs and PACs with an average of 300+ ventricular ectopics per hour.  When it was bad, I had palpitations near constantly, feeling “skipping” every 1-4 beats repeatedly in sequential runs of bigeminy or trigeminy, which often lasted for hours.  I had bursts of tachycardia where my heart rate suddenly doubled or tripled to 200 beats per minute.  The elevated and erratic heart rate was not getting any better, and it seemed to be prevalent the majority of the time.  Additionally, I had frequent, non-radiating chest pain/discomfort left of my sternum; this was not associated with exertion.  It was usually a focused ache that built and subsided for hours, punctuated by an occasional shooting, stabbing pain that lasted only an instant.  This pain did not seem to correlate with the ectopic beats.  (The “skips” were not painful, themselves; I just felt the pause/hiccup or ensuing canon wave or jolt.)  These episodes of pain occurred primarily in periods of sedentary activity or while at rest, and they even woke me up at times.  Unlike classic angina, this pain did not occur in response to heavy exertion, and it was not accompanied by weakness or shortness of breath.  It did not diminish with rest, nor was it related to breathing, and I doubted it was G.E.R.D. or stomach orientated.

Prior to the “cold,” I never had any heart trouble or given it a thought.  I had always been healthy and active, had never been overweight, nor had I any family history of heart problems.  I had lived in a ski town at 7000 feet for 5+ years, skiing 85-100 days annually, and mountain biking, jogging and hiking often.  I ran my own house painting business, which was fairly demanding manual labor.  I didn’t smoke or drink coffee, and drank only socially.  Alcohol did not seem worsen my symptoms.  I didn’t do drugs and had never tried cocaine, speed, or other narcotics that jolt the cardiac system.  I also had a pretty good diet. I became familiar with the whole “MVP syndrome” but didn’t feel that most of the symptoms applied to me.  I had a “Type A” personality, but really did not feel too stressed other than the normal anxiety induced by my heart symptoms.  I was a well-adjusted, confident individual who, although a little high-strung, was basically pretty happy and very eager to get on with life.  I was aware that my anxiety over the situation was not helping but added to it, in the sense of a “self fulfilling prophecy.”  However, I couldn’t believe that it was the sole cause.  By then, I had tried to emotionally remove myself from the situation to be as objective as possible.  I tuned out and ignored my symptoms for the most part, but couldn’t help but “clinically” observe and note them at peak occurrences.  In short, I was forced to analyze them in a detached manner by their sheer frequency and pervasiveness.  I couldn’t help but doubt the doctors’ claims that it was no big deal when my heart was constantly “redlining” and misfiring almost every beat for hours on end.  The experience actually forced me to mellow out and relax more as well as re-prioritize and be thankful for the good moments.

I stopped taking the drugs prior to the EP test and did not resume them as I was uncomfortable with the potential long-term side effects of these drugs.  They didn’t seem to work anyway, and I felt that I should just learn to live with these symptoms if they were, as I’d been told, simply annoying and not serious.  Additionally, I felt that the drugs to control the palpitations might adversely affect the erratic/elevated heart rate by slowing it down too much at the times when it was “normal.”  I started taking extra magnesium and calcium daily to see if that helped any of my symptoms.  I looked at the Holter monitor results along with some other tests and found apparent inconsistencies which, when pointed out to the doctor, would get a response of, “Well I’ve really never seen that before,” accompanied by shoulder shrugs and head scratching. 

I was getting pretty frustrated with the whole thing by now and continued to deteriorate.  I questioned my sanity and wondered if I was just being a paranoid hypochondriac.  After all, this was the 21^st century, and I had seen several reputable cardiologists and specialists. I had spoken or corresponded with many more, and they all said I was fine.  But I didn’t feel fine.  I knew my body, and things were not right.  During periods when I felt OK, I’d tell myself, “See it’s all in your head.”  Then things would go nuts again, and I’d think, “Forget the experts, I know something is definitely not right.”  I began to fear that I either had some crazy, terminal disease or even worse that I would have to go on living this nightmarish existence.  I went from not wanting to take any drugs to trying anything and everything that might help.  I began practicing conscious breathing techniques and read up on “skilled relaxation,” meditation, and holistic alternative treatments.  I truly believed in mind over matter and the body’s ability to heal itself.  I tried acupuncture and went to some “voodoo” healer (with a testimonial track record of miraculous cures- disappearing tumors, cripples walking again etc.) who basically knocked me down with weird, sadistic treatments.  Nothing seemed to help my symptoms.  

I began to wonder if I had exhausted all possibilities of conventional medicine other than stronger drug therapy.  Was I wrong to think that these three separate symptoms could possibly result from a common cause and should be addressed as such, or should each symptom be treated independently of the others, as had been the approach so far?  Were the frequent ectopics and wildly fluctuating/elevated pulse truly inconsequential as I was told, or could they be taxing my heart by adding additional load and strain to it?  Should I try ablation again, and if so, would it improve the erratic pulse and pain or just impact the palpitations?  Would an endocrinologist be better qualified to address my crazy elevated/erratic heart rate if it was due to a nervous system imbalance or a glandular disorder like pheochromocytoma?  Was I being foolish or doing damage by not wanting to take daily medication for the rest of my life?  Or was this all psychosomatic?  Was I just being a hypochondriac who should go see a psychiatrist?  I wanted to feel normal and good again, but if that wasn’t possible, I wanted to manage as best as I could and move on.  Contrary to what I’d been told, these symptoms were not improving with time and, in fact, were increasing and worsening.

Finally in August of 2001, 18 months after noticing the palpitations, my cardiologist stumbled onto something by chance.  It seemed he had a physician friend (and now patient) with Addison’s disease who had been diagnosed with POTS as well.  He was pretty sure this was what I had and that he had found the missing piece of my diagnosis.  So I took a tilt table test, and sure enough, I was “off the scale,” far exceeding the 30 bpm heart rate increase from supine to standing, which is the clinical definition of POTS. My heart rate went from 50 to over 100 bpm in about 10 seconds, and it never stabilized or dropped down, it just kept creeping up until they concluded the test.  At last, vindication!!  I was right all along and they had been missing something.  But my elation soon vanished as I poured over the Internet info and saw bleak, depressing stories.  While my doctor had succeeded in diagnosing POTS, he had no idea how to treat it.  He tried drugs to lower my blood pressure, which seemed stupid to me because I was hypotensive at rest and thought that they might lower my blood pressure to dangerous levels. They didn’t work anyway.

I researched doctors and institutions familiar with treating POTS.  I sent all my records to Vanderbilt, which rejected me on account of the arrhythmia because it wasn’t “purely POTS” and was too complicated.  That crushed me.  The Mayo clinics didn’t want me either.  By now, I was not eating or sleeping and was getting desperate.  I had lost 30 pounds, and I felt bad all the time.  I felt as if I was hung over and sleep-deprived.  Along with this, I felt like I drank a pot of coffee, smoked a pack of cigarettes, and had to dig a ditch in the hot sun without any water.  I was shaky, hollow, and jittery with no respite available to me through rest.  I had completely abandoned any sort of social life and withdrew from most of my friends.  As soon as I found out POTS was a nervous system disorder, I quit my painting business because I was sure chronic exposure to paint thinner (mineral spirits- read the warning label) coupled with the “cold” (viral infection- which was the common catalyst in many POTS stories) caused my condition.  So I wasn’t working anymore and was quickly becoming non-functional and depressed.  My doctor prescribed Paxil, which really ticked me off, and I refused to take it. 

Because POTS was nervous system related, and by now, I was confident I knew much more about it than my cardiologist, I decided to see a local neurologist.  Fortunately, he was familiar with POTS and confirmed that there were many different causal factors.  He said that the effective treatment of POTS depended on the cause.  Just as a fever is simply a symptom attributable to various causes, one would treat a malarial fever differently than one caused by heat stroke or the flu.  He further explained that because it was a disorder of the nervous system, there was definitely a mental component to it.  What I was experiencing at times were symptoms of a panic attack, but fortunately, in my case, without the panic (just the rapid heart rate, sweating, agitation etc.).  He compared it to clinical data of asthmatics who feel they cause their attacks.  The studies show they first experience a bronchial spasm and then “freak out,” not the other way around.  The physiological response by the brain to the body’s symptoms is the alarm going off due to a problem, not a psychosomatic manifestation.  While that was reassuring, it still didn’t help me in any direct way. 

Earlier that summer, I had decided to stop ignoring the arrhythmia and sought out the experts in electrophysiology.  The guy who did the first RFA locally wanted to do it again, this time without anesthetic, but I was hesitant because I didn’t like his attitude.  While I was recovering in the hospital overnight following his original EP test/ablation, the nurses became alarmed a couple of times when my heart rate was below 40 bpm while I was sleeping.  The following day, my heart rate was 150 bpm while standing and walking for the first time since the procedure.  This doctor completely dismissed my accounts of this elevated heart rate being part of my problem; he said I was “just dehydrated” and made me sit with a fluid I.V. for four hours.  He seemed to be angry that the procedure didn’t work because it was a blemish on his record rather than demonstrating any genuine concern for me, the patient.  He had already fried two spots on my heart to no avail, and I figured if I was going to go through that again, I wanted the most renowned, reputable experts in the country to perform the second ablation.  This led me to make an appointment at the Cleveland Clinic Foundation’s E.P. department for later that fall. 

While later researching POTS experts, I was fortunate to find that the CCF had a doctor who treated POTS in their Syncope Clinic.  So I figured I could kill two birds with one stone and try to fix the arrhythmia with another RFA and treat the POTS while I was there.  They were kind enough to allow me to book an appointment with the POTS doctor after my scheduled electrophysiology appointment.  So off to Cleveland I went, where the syncope doctor performed a series of tests to confirm my POTS.  I had another tilt table test (where they were “impressed” with my heart’s ability to quintuple its rate from 40 to 200 bpm within a few minutes).  I also had blood volume, hemodynamic, and isuprel tests.  All these confirmed the POTS diagnosis and specifically found that I had hyperkinetic circulation as well as an imbalance in my beta-adrenergic response.  I was told to stop all strenuous activity for 6 months to a year and to take a combination of Lopressor, to slow my heart rate down, and Levsin, to help the beta-adrenergic imbalance. I was told that I just needed to give my body time to equilibrate, and I would probably be OK.  Would I ever ski or run again?  Could I fully resume my previously active life? Only time would tell.

Meanwhile, the EP doctors said I had a rare but “textbook” EKG signature that they had seen in two-dozen cases over the last couple of years and successfully treated.  It turns out that my arrhythmia was being triggered NOT in the right ventricular outflow track as the first doctor had thought (and ablated), but in the aortic cusp.  This was a much riskier ablation because obviously, if the aorta was nicked during the operation…well, it would not be good.  I decided to go for it and returned to Cleveland later that month to undergo a second EP/RFA procedure to hopefully “cure” my arrhythmia.

(I’ve neglected to explain what is involved in a RFA.  Similar to an angiogram, they put you under light sedation, tap the femoral artery in the groin, and run a wire up into your heart.  Then, they stimulate various areas of the heart with electrical impulses and drugs to try to find the spot that is generating the extra signal; it’s kind of like looking for the needle in the haystack.  Once and if they find the culprit spot, they then zap it with radio waves to fry it into scar tissue, which is electrically neutral and eliminates the aberrant signal causing the ectopic beats.  Unfortunately, many arrhythmias are sensitive to sedation and “disappear” during the procedure, as was the case in my first RFA.  The CCF docs told me they used atypical drugs that were different than those used in my first procedure to prevent this and not to worry.) 

So they did the ablation and felt it was pretty successful, save the fact that after four hours on the table my arrhythmia ceased again.  I had not one ectopic beat in ninety minutes while under sedation, compared to my normal several hundred per hour 24/7 for the past 20 months.  They felt they might have to do it again in a few months to “clean it up a bit” depending on how things progressed with my recovery.  “Great,” I thought. Once again, doctors dismissed my concerns only to have my fears realized after the fact. But hey, what’s another round of poking my heart with wires?  Even worse was that although my arrhythmia had been 95% PVCs up to this point, following the second RFA, the composition of my arrhythmia flip flopped from PVCs to PACs!  I had them slap a Holter on me the day after the RFA during recovery because I could feel something was different.  (By this point, I was so attuned to my skips that I could accurately call out what was a PVC and what was a PAC while undergoing echoes and EKGs).  The Holter showed an average of 300 + ectopics per hour.  While clinically PVCs are more serious than PACs, the PACs seemed more bothersome to me.  This change in ectopic composition was explained to me as a probable rebound effect.  The sudden absence of near constant PVCs had my heart reeling and the PACs were stepping up to take over the recently cleared electrical pathway.  I just had to wait a few months to see what transpired. 

So I returned home with instructions to relax, take the drugs, and see what happened to both the POTS and arrhythmia symptoms.  Additionally, I had a prescription to start a level-3 cardiac rehab program to help the POTS symptoms.  It took several months to get the insurance company to approve this, during which I definitely felt better as far as the POTS symptoms, but the arrhythmia was bad as ever.  My elevated heart rate seemed to be normalizing by no longer “redlining” and by responding appropriately to exertion/exercise and rest/recovery.  I’d say I was back to 50-60% functionality of my pre-POTS condition.  The arrhythmia was actually getting worse though.  Further Holters supported this conclusively; they showed a maximum of over 800 PACs in one hour, and that wasn’t even the worst day!  I was resigning myself to returning to Cleveland for another round of RFA when something strange happened; I woke up one morning and felt good.  Normal.  My heart was actually beating regularly.  I sat there in bed for a half hour waiting for the skips to start.  After a couple hours without a skip, I was incredulous.  As quickly as it had begun, it seemed to be gone.  Just like that.  It was like flicking a switch on and off.  It was the darnedest thing.  I had to restrain and temper myself because it was too good to be true.  The next day was as good as the first.  After a week I couldn’t believe it.  Was it really possible?  Could I really be over this thing after more than two years?  The doctors were finally right, and I just had to give it time to let my body equilibrate and adjust to the procedures and treatments.

I finally started the cardiac rehab program and felt pretty weird because I was this 30-year-old guy in with a bunch of geriatric heart attack patients.  The program was very conservative and initially seemed like a waste of time, but I had prepped the staff with all the POTS info I had and put them in touch with the experts at CCF.  So I acquiesced to their expertise and eagerly went as often as I could.  After a month or so, they felt I had progressed to the point where I could exercise on my own.

I was really feeling like my old self (my pre-POTS self) physically.  Mentally, it was much more of a struggle.  I kept waiting for the POTS or the arrhythmia to suddenly come roaring back.  I was constantly checking my pulse.  The fears were always lurking in the back of my mind.  It was as if this recovery was just a temporary reprieve, a quick taste of freedom before being enslaved again like some cruel joke.  But the recovery didn’t end.  I took an entry-level position with a software firm and started working again for the first time in nearly a year.  I started jogging again; I didn’t go too far or too fast but I was running and asymptomatic on all fronts.  It was amazing.  That winter, I returned (for the first time since I had departed) to my old ski town to ski with my buddies for four days.  I was very nervous as I still considered myself to be in terrible shape and was worried about overdoing it.  For the most part, my friends were unaware of what I’d gone through and hence decided to punish me hard on the hill.  To them, I was just another fat, out of shape, city guy who used to live here and deserved to be worked over hard for old time’s sake.  Other than sucking wind due to the altitude and lack of conditioning, I had no problems and had a blast.  For me, that was the true test. The fact that I could be an out of shape desk jockey and go back to hang with the boys with no POTS/arrhythmia repercussions was the proof that I was back.

The spring of 2003 marked three long years since I noticed something wrong while down in Costa Rica.  Later that summer, I once again returned to the Cleveland Clinic for a follow up with the POTS and EP doctors.  I had a complete physical and neurological evaluation and received a clean bill of health on all counts.  Since then, I moved back to Colorado and have skied about 85 days this past winter.  I work for a friend’s construction company as a carpenter, which can be pretty hard physical work.  I still get the occasional ectopic beats here and there but nothing of consequence.  It probably took another 2 years to mentally get back to my pre-POTS self, but nowadays, I rarely think about it.  When I find myself getting all worked up over stupid, silly, day-to-day aggravations, I make myself remember.  It forces perspective on my life and makes me laugh it off.  I stayed on the two drugs for a long time.  I quit the Levsin after about 15 months and finally quit the Lopressor after 3 years.  I was afraid that if I stopped the medications, the problems might come back; it was a mental crutch.   “If it ain’t broke, don’t fix it.”  But eventually I had to try, and luckily, there were no problems.

The point is, that if someone like me with two overlapping but separate conditions (POTS and a severe arrhythmia) can wind up recovered, then there is hope for everyone out there. It is not fun, easy, or quick, but you can resume your life and be normal again.  I’m nothing special and certainly did not conquer my conditions through any exceptional mental fortitude or anything like that.  This thing beat me down.  I started out strong and determined but eventually became despondent and succumbed to it.  I wouldn’t say I overcame it; I just endured until eventually the clouds parted and the sun shined once again.  Luckily for me, sometimes that is all it takes.  You just have to plod along and do your best to persevere and weather the storm.  If you can just go on every day and do your best to ride it out, you may get there.  This is no Lance Armstrong story of amazing grit and determination.  I am an average Joe who did his best and sought out the help I needed.  It could come back tomorrow.  I hope not, but if it does, I’ll be better able to handle it and will have a much better attitude.  I read somewhere that the illness is the physical affliction and the sickness is how you mentally deal with it.  They can work against you in that the worse you get physically, the worse you feel mentally, which in turn makes you get worse.  It can turn into an ugly downward spiral, but you have to do what you can to try and suck it up to break the one aspect of the cycle that you can impact.  Do be proactive and educate yourself and your doctors.  Be aggressive and explore all options.  Be persistent.  I was treated by over a dozen physicians in various disciplines and consulted or corresponded with two dozen more.  Many were dismissive and did not want to deal with me because my case was too complicated.  Keep knocking on doors even after they slam in your face.  I lost 3 years of my life, but eventually I did get it back.  The information out there on POTS and today’s treatment advancements is far better than it was six years ago; so don’t give up because there is ALWAYS hope.

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Karyn's story

by Karyn
October 2004

I define myself as a mother of two, a wife, and a neurologist, in that order. POTS has affected all of these roles. I was diagnosed with severe POTS by Dr. Low at the Mayo clinic a few years ago, but significant symptoms started in 1996 during my first pregnancy. I was on bed rest for two months and could not stand up long enough to brush my teeth or shower. I saw two cardiologists who said it was "just pregnancy." Even though I am a neurologist, at that time I knew nothing about neurocardiogenic syncope or POTS. I was never taught a thing about them during my training. I received an epidural for delivery, and my blood pressure bottomed out. I needed a C-section due to failure to progress. Thank God I made it through delivery, and I had a healthy baby girl. After delivery, my symptoms eventually resolved after about 3 months.

When my husband and I were trying to decide whether or not to have another child, I saw a cardiologist (electrophysiologist). He diagnosed me with neurocardiogenic syncope. In retrospect, I really have POTS, but he was close enough. My husband and I felt better about a second pregnancy knowing that I finally had a diagnosis and knew how to treat it if necessary. The second pregnancy was a million times worse than the first. I was on bed rest for 2 1/2 months and required a maximized dose of a beta blocker, compression stockings, salt, and lots of water just to get out of bed to use the bathroom. I was told by my OB, anesthesiologist, and cardiologist that I would need another C-section because pushing during labor would cause syncope. I am sure they were correct. I have never even been able to blow up a balloon without near syncope. I found one anesthesiologist in the entire city who would try an epidural for the C-section instead of general anesthesia. My blood pressure could have bottomed out with general as well as an epidural. He loaded me with more than one liter of saline and albumin which allowed a safe epidural. I was blessed with a healthy baby boy.

I was not so lucky with POTS after the second delivery. The symptoms have never gone away. The false hope of having the symptoms vanish again was crushing during the first year. My symptoms are the usual for POTS: dizziness, fatigue, brain fog, shakiness. When I type the symptoms, they sound so lame, but they have impacted my life tremendously. I also have weekly migraines and, most recently, neuropathy (extremity numbness, tingling, burning). I take huge doses of a beta blocker, midodrine, mestinon, as well as salt tablets, lots of water, and compression stockings. My menses are suppressed too. Despite the above, I still have frequent daily symptoms and need to use a motorized scooter to avoid syncope triggered by prolonged standing or walking. At least I don't pass out, thanks to the above.

Besides the symptoms themselves, my career and family have been affected by the illness. At least two out of four of my neurology partners were cruel and mocking of my illness. One of them used to roll his eyes when I would lie down between seeing patients. I was no longer able to take call, which involves working for 36 hours or an entire weekend at a time. My pager would go off in the middle of the night, and I used to pray that I would not have to drive into the hospital. My partners really did not care WHY I could not take call. They just wanted to get rid of me. A lawyer told me that I could have filed a discrimination suit against them, but I did not want to waste my energy. I found another job as a neurologist and now work part time without call.

The hardest thing for me has been learning that I cannot cure myself by "willing it" with my mind. Before this illness, I thought I could do anything with hard work and determination. I can help the illness with positive attitude, but I cannot get rid of the illness. I also find it hard to limit myself. I have overextended myself on many occasions, usually around holidays, and paid the price. I look around at other kids and see parents who are involved in a lot of their activities. My husband has type I diabetes, so it is hard for both of us to be active.

When my daughter was younger, I told her I was sick one day. She said, "Mommy, you are NOT sick. You are not coughing or sneezing." She understands better now at age 9. Similarly, adults look at me and have no idea that I could have a health problem because I look young and healthy. I am 40 years old but have been told that I look like I am in my 20's. When I use a handicapped spot or a scooter at stores, people stare at me, trying to figure out what is wrong with me, or whether I am abusing these aides.

I have learned some life lessons as a result of the illness. I like to think that good things can come from bad things.

1) I am more patient and empathetic with my patients. I truly understand what it means to be ill. At times, I have felt more kinship with my patients than with my physician colleagues. When my partners at my previous job were being so cold, my patients were giving me hugs and kisses and crying for me!

2) I pick and choose what I will get upset about. Getting angry or crying flairs my POTS symptoms.

3) Not everyone cares or has capacity for compassion. I try not to take it personally. It is THEIR flaw. I try to forgive and go on. Anger towards them gives THEM my power.

4) There are some wonderful, wise people out there.

5) I count my blessings and am grateful for what I do have. I am most grateful for two healthy, delightful children, despite the pregnancy-triggered POTS.

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My Life As I Know It Now

by Lisa
January 2006

Before this experience I had a different perception of doctors; I never doubted them.  I was lucky to have only my regular checkups, and for my few, small medical issues, the doctors were always able to come up with an answer to fix the problem.  I had only dealt with doctors over simple matters, but had witnessed family and friends deal with them for a variety of medical conditions.  Occasionally it took a lot of testing and some time to get to the diagnosis, but the doctors always came up with a treatment plan, whether it was surgery, medication, or some lifelong management of a condition.  But now I have been exposed to a whole new side of the medical field.  I never imagined I would run into the situation where I would present my symptoms to the doctor, have numerous tests come back abnormal, and then they would say “I don’t know what’s going on.” 

I found myself frustrated back then, and now, more than two years later, my frustration has reached an all time high.  I now have experience dealing with many healthcare facilities and doctors.  I’ve had some great experiences and some horrible ones at most of the facilities I have visited. 

Medicine, as I’m constantly told, is not an exact science, and therefore doctors do not have an easy job.  They have worked very hard for their credentials and for their positions.  Not all medical cases are by the book, and a good doctor has the ability to think outside of the box.  Many doctors are inclined to be analytical rather than creative, imaginative, and sympathetic.  Doctors encounter different issues everyday in their line of work, and people’s lives are in their hands.  Doctors’ jobs involve a lot of problem solving; most patients don’t have all the textbook symptoms. (I wish I had a more textbook case.)  Some go by the books, but I’ve learned that cases aren’t always that simple. 

When a doctor is going over test results with me, they almost seem disappointed when, for instance, a brain MRI comes back abnormal with unspecific findings.  It’s as if it would be easier to have something easily identifiable, such as a brain tumor.  It’s so hard when doctors keep finding things wrong and discovering all these abnormal tests results, but cannot give me an official diagnosis.

I keep getting diagnosed with various conditions.  Almost every part of my body is affected, but all of the findings turn out to be “non specific.”  I still feel so helpless because I need my doctors’ help determining the underlying cause.  Doctors are having a difficult time putting together the various puzzle pieces of my symptoms and abnormal tests.  I keep being told that my condition is rare.  Doctors are decision makers; although, in my experience, they do not always agree with one another.  Some doctors have very conflicting views.  Since I’ve been diagnosed and undiagnosed with certain conditions, I am learning that very little is conclusive in the field of neurology.

I’ve been told the worst news by some doctors.  They say that I may never get better and I’ll just have to learn how to live with my symptoms.  Other doctors tell me to look on the positive side of things.  They say that they are not giving up on me, though I am not their typical case.  I have not responded well to any treatments, and no symptomatic relief has done much for me yet. 

More has to be done, and I’m not one to give up.  Everyone must be a leader for his or her own care; you cannot sit back and wait for things to happen or you will be forgotten in the healthcare system.  After all, you are the most important member of your healthcare team. 

Research is being conducted for many of these neurological conditions, and the doctors say they are learning about some of these disorders right along with me.  The doctors tell me how frustrated they are in what they don’t know about these conditions, but at least they can go home at the end of the day and function.   Doctors, as leaders, should use the resources at their disposal to help patients.  They should not give up on their patients and tell them that they may have to wait until they get a lot worse to find out what’s happening.

The autonomic nervous system affects basic bodily functions vital for living, and therefore, disease of this system interrupts many facets of how the body works.  I have seen numerous doctors in many different specialties, and I know that I am a complicated case.  It is hard to get someone to look at the whole picture.  Doctors seem to only care about the abnormalities in their own specialty, but my varied, seemingly unconnected symptoms may be related.  What can I do?   There is only so far I can get without these doctors, and all I want is to be able to function again in some capacity.  I feel like so much of my time is spent waiting for test results or for the next appointment.

Many doctors seem to be so wrapped up in their research, or another aspect of their job, that they seem to have forgotten why they went into medicine in the first place.  In a perfect world, doctors would work together and the patients would be the most important thing, but in many instances that is not the case.  Doctors seem to want simple cases and do not want to spend the extra time investigating mysterious cases.  They just pass those off to somebody else.  A good doctor is aware of their strengths and weaknesses; they may not always have answers or solutions, but should try to use the resources at their disposal to get them.  Doctors have the power to change things.  They have the ability to accomplish so much.

Before all of this, “dysautonomia” was never a word in my vocabulary, but it is a word I now use regularly.

“Dysautonomia literally means dysregulation of the autonomic nervous system.  The autonomic nervous system is the master regulator of organ function throughout the body.  It is involved in the control of heart rate, blood pressure, temperature, respiration, digestion and other vital functions.  Dysregulation of the autonomic nervous system can produce the apparent malfunction of the organs it regulates.  For this reason, dysautonomia patients often present with numerous, seemingly unrelated maladies.” (www.potsplace.com)

The latest condition I have learned about is mitochondrial disease.  The abnormal muscle biopsy I had indicates that I could have this condition, which can vary in type and severity.  This is a group of neuromuscular diseases that are usually genetic and most often affect children.  There is no cure for mitochondrial disease.  At first, I thought it was a definitive diagnosis, and I was prepared to move forward with this.  I have now learned that although I have a mitochondrial dysfunction, which will never go away, this may not be my definitive answer.  Even if I do have one of these neuromuscular diseases, the doctors have absolutely no idea which one, and there would be nothing they could do for me anyway.

I feel as if I have an invisible illness at times.  When people see me, I often don’t look sick, but people don’t know what is going on inside of me.  I have so many pieces of different diseases, and it would be bizarre if they weren’t all connected somehow.  I never thought with today’s medical technology that it would take so long for me to be diagnosed and treated.  I’m still hoping that day will come soon.

People don’t understand what it is like for me to live day by day.  I even forget what it is like to feel healthy.  I haven’t felt right since Thanksgiving Day, 2004 when this all suddenly began. When I woke up that day I felt fine, but I became sick later that morning.   I thought it was just the flu, but then it never went away. 

Among all the other symptoms I experience, the dizziness and nausea are by far the worst.  I am dizzy and nauseous, to some extent, every minute of every day.  There are times when these symptoms are better than others, but my symptoms are unpredictable, which is one of the most frustrating issues.  I never know when I’m going to faint or when I’ll have to use that plastic bag that I always have with me in case I need to vomit.  My other symptoms (like abdominal pain and headaches) are a nuisance, but they are not the ones that keep me from functioning.  I experience numbness, tingling, and some loss of feeling of certain body parts.  I also cope with painful burning sensations in my hands and feet as well as poor hearing at times.  I’m sensitive to light and always feel dehydrated.  I deal with tachycardia and can’t even shower without feeling faint or the fear of burning myself because my temperature perception is disrupted.  The worst problem, by far, is the unpredictability.  If my symptoms weren’t so unpredictable I could possibly hold down a job, but even when I am able to accomplish things, I can never do anything for too long before my symptoms become unbearable. 

My life may never be the way it was as I knew it.  I can handle that, but there has to be something out there that will get me functioning again.  I want to resume my life, even if it’s not the way I was living before this illness.  I just want to resume some sense of normalcy.

There were so many things I took for granted.  People often do not understand how my body cannot do the things most people’s bodies do subconsciously.  Then again, I also do not understand how one day my body suddenly decided to stop compensating for gravity after I had happily lived with it for so many years.  At times I feel helpless.  I’ve always been an independent person, and now I find myself relying on others for basic tasks.  I cannot drive.  I’m constantly dizzy and getting sick.  I have trouble reading, filling out forms at doctors’ offices, and even emailing takes a lot out of me.  Sometimes walking is hard, but there are other moments when I cannot even stand without fainting.  It’s hard to sit back and wait like doctors recommend, often giving me no choice in the matter.  I constantly find myself, despite the advice of my doctors, pushing to do more, even though it makes me sicker.   I’m sure that they couldn’t just sit still and wait on others to determine their quality of life.

You learn a lot about yourself and others through an experience like this.  I have had a lot of time to step back and reflect on things, to re-evaluate my life, and to change how I want to live it.  I have been exposed to a whole new world and feel that this experience will make me a better leader in the future.  I just wish so much suffering didn’t have to be involved.  Sometimes it’s hard to remember the rest of the world has continued moving while my world has stopped.  Day by day, nothing seemed to change, but then I noticed everything was different.  The future is always uncertain in this unpredictable world. 

Through this experience, I’ve never felt so motivated, yet so physically unable to do things.  I have a better idea of some things I want to accomplish, though.  I hope that in the near future I will be able to put all this energy to good use, once my health has improved.  I would like to help those people out there who find diagnosis a mystery.  I don’t want anyone to go through what I’m going through.  It’s hard to have a rare disorder with which people are not familiar.   

“Everything is okay in the end; if it’s not okay, it’s not the end.”- Anonymous.  I guess I will have to let life turn its own pages, because right now the end of this book is unwritten...

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