Saturday, July 3, 2010

Postural Orthostatic Tachycardia Syndrome and Running Issues, and Life Issues in General

I decided to write this note because I have had a significant piece of information, that just made most of my life make sense. I decided to share what I have found out, because I am finding there are other people who have this same condition, who are never diagnosed correctly and end up like me just thinking all the symptoms are in your head.

The reason I decided to seek care is because increasingly over the last year I have had worsening symptoms, despite overall feeling much more conditioned and generally healthy. I feel like there is no reason why I should not have cut off an hour off of each of my courses I finished this year. Instead I had major problems on the Antelope Island 50 miler and finished having to walk the last 4 miles because I couldn't breathe, not because I couldn't run!

I did the Grand Canyon run, and did fine until it got hot, and then had some heat issues, the next day I was having fainting/lightheaded/ear ringing issues, that were only fixed by Gatorade, and more Gatorade.

I knew to take in Gatorade because The two races I DNF'd last year, especially after the Bear 100 DNF, I had the same issues and thought I was going crazy after waking up in the middle of the night!

I have been working with a Sports Nutritionist for almost a year now, trying to figure out these problems, and we are getting closer, but she cued in that I am getting very hyponatremic after these races, which is probably why I also was getting sick in the heat, and my times have been getting slower despite my running speed getting faster.

At the Squaw Peak 50- I ended up taking in 1500-2000mg of salt per hour, I mixed salt directly into my water because plain water just goes right through me. I felt better, I didn't die even though other people around me were because of the extreme heat that day. But I ended up making it to the cut off at mile 33 just 3 minutes to spare! Even though my times were faster at the beginning then the previous year, the heat slowed me down that despite the early start, I took more than 1:30 hours longer to complete that part of the course.

After that I sat for about 45 minutes to recover from pushing my time the last stretch in the heat, up the 3.2 mile sheep creek climb. I felt fine after resting, and started up with my speed again, until running across Marc and John and deciding to finish the course out with them, because the were both really dehydrated. Marc commented on me having the whole kitchen sink on me that day, and the fact is I have started carrying a lot more then I want to on my runs because it is saving my self. I need more salt then is almost humanly possible to take in.

Something just wasn't seeming right. Recently I started having major blood sugar issues during the day. I have problems in the heat, I get dizzy a lot especially during conditioning when we are doing exercises that go from laying or sitting to standing. I have breathing issues, anxiety like issues, and get sick to my stomach all the time, even when I am not working out.

I actually have had these issues my whole life, at least since i was 12, but I didn't know how to tell people what was wrong with me. I thought it was all in my head, but after some of the symptoms started interfering with my performance so much, I could no longer think they were just in my head anymore.

So I went to see Dr. Liz Joy, at the Madsen clinic at the U of U, and although she is still testing me, and I don't have a positive confirmation on my diagnosis until some labs are complete, she is 90% sure I have Postural Orthostatic Tachycardia Syndrome (POTS). I had never heard of it before, and neither have most doctors. In fact if you do an EBSCO search you will be lucky to find 20 related articles. Elena had mentioned something about being tested for POTS at our last visit because I think the sodium issue is perplexing her. But I didn't know anything about it.

So I did some research on it, and suddenly my whole life is making sense. Like I thought I was crazy my whole life! I have been accused of being attention seeking for some of these symptoms, and so after that happened a couple of times, I learned how to control most of them. In fact many of the symptoms I have had in life, that I can't explain, I have just decided are in my head because everyone else told me they were.

So I am posting this, so that if you see this in yourself or kids, you may consider having them tested by someone who knows what they are talking about instead of living a life of being misdiagnosed, or even told they are making the symptoms up, or they are all psychosomatic. A lot of people suffer silently, like myself, because you get so used to compensating for the symptoms, and you are afraid to talk about them, and don't think they are real anymore.

Here is what is happening in the body: there are different forms of this syndrome, it is an idiocratic illness, which means it is correlated with different disorders, and many symptoms overlap, but it is a way of saying "we don't know why the hell you have this, we just know you do!"

Dr. J told me most people with this syndrome end up gravitating toward the things that help control the symptoms because they can't tell anyone what is wrong, and it is often misdiagnosed as a range of mental disorders because of the anxiety, depressive, and even bipolar like symptoms that it sometimes looks like, but does not quite fit. This is the story of my life, nothing quit fits!

Basically these are the symptoms I do have, and these are the symptoms I don't have.

 75%-85% of people with this syndrome are blond-haired, blue eyed females, and between 15-50 years old. It may be hormonally related because many people notice an onset of symptoms around menarche. In my case, I believe menarche was the start of these symptoms.

The first thing I read is that many people who have this syndrome have some degree of hyperextensible joints. While There is a a wide range of severity Eh-lers-Danlos syndrome is one that is most associated, and it can come in mild to severe forms. I have hypermobility in my arms, knees, and also the tendons in my ankles. This can also lead to higher rates of injury and sprain. Interestingly, I used to twist my ankles all the time, however this has not been a problem the last two years, I believe because with ultrarunning, I have probably gained enough strength, that I have better control of these parts of my body

Second the connective tissue in the lower extremities may have more laxity and be more prone to venous pooling.  While I do not have the most serious symptoms of Ehlers-Danlos syndrome the symptoms I do have are: loose unstable joints, hyperextension of some joints, easy bruising, and abnormal wound healing. I also have lower muscle tone despite training enough that I should be an elite athlete! Another condition I need to be tested for is osteopenia, or low bone-density, because it can be associated with this disorder, and I have a past history of an eating disorder on top of that. When I should have been making calcium deposits into my bones, I was probably losing bone mass! Yep, double whammy!

Third, associated with Ehlers-Danlos syndrome- nerve compression disorders, functional bowel disorders, and Premature Rupture of Membranes during pregnancy-  I have not been diagnosed officially with the first two- but after my research I found out all the weird muscle and nerve sensations I have in my extremities, probably fit, as well as digestive issues. Oh, and with my first pregnancy, I had Premature Rupture of Membranes as well!

The second syndrome I found associated with POTS is Arnold-Chiari malformation- also comes in different severity of symptoms. Basically caused the brain not being profused correctly, or hypovulimia. The symptoms I have that fit this association :headaches aggravated by valsalva maneuvers (laughing, coughing, crying, sneezing, yawning), Tinnitus (ringing in the ears- not severe for me, comes and goes and happens more when I am low in sodium), Dizziness, nausea, muscle weakness, impaired gag reflex- I thought this was a side effect of years of bulimic symptoms, but it may be that i have just lost some ability to gag on my own because of this, dyspahgia (difficulty swallowing), Dyautomia (tachycardia, sycope), and polydipsia (extreme thirst), and hand weakness (comes and goes randomly for me, always thought it was odd)

The symptoms I do not have (thank goodness there are a few!) associated with these two are club foot, platelet aggregation (to my knowledge), vascular skin conditions, hearing loss, and swan-neck deformity of the fingers, also nystagmus, and I don't think I have sleep apnea. I don't think i have fibromyalgia, but I do have a lot of the symptoms associated with fibromyalgia.  Other symptoms I think I have- neuropathy- weird almost burning sensations in my arms and legs like- icy burn, tingling, numbness, that I want to run out! Stress incontinence and constipation are also associated.

Gastritis- while again, never diagnosed yet, I have bloating, nausea, burning sensations in the upper abdomen, premature fullness, discomfort with fullness, generally lack a normal appetite. Also IBS symptoms.

For Chiari symptoms- I have pain, weakness, and numbness in the upper back, shoulders, arms, and hands. One symptom that I do not have is sometimes with this syndrome people can not feel cold, heat or pain in extremities- I have feeling, just nerve issues, and muscle burning that is not really pain but just a sense of an urgency to have to move and work out the sensation!

One other auto immune autonomic ganglionopathy is associated with POTS. I have lots of these symptoms, but I don't know if this is one of the ones the lab is testing right now- severe orthostatic hypotension, syncope, constipation, urinary retention (my urologist says i am an enigma! After voiding, they can usually find 4-8 more cups of urine to drain out), dry moth and eyes. I do not have fixed and dilated pupils that is a possible symptom

"thoracic Hypovulemia- a person can either just not have enough blood volume, or in this case I may have normal blood volume, but vasodiatation that is too high, and not allowing pool to effectively circulate, or reduced stroke volume, especially in exercise- This can lead to low sodium levels, low profusion to the brain (which I am almost sure I have now! I will say why in a minute), and symptoms can worsen with heat and exercise, but running actually helps because you are moving blood out of your legs! my heart rate has gone abnormally high in the past with very little exercise and being conditioned, however, long distance running has improved this symptom.

Additionally- strange symptoms i have- I wake up feeling flu like every morning, until I get out of bed and move for about 15-20 minutes, then It goes away, I have feelings of anxiety when my brain actually is pretty calm, but the hypofusion to the brain can cause this, confusion and feeling disconnected from the world- mostly this happens with long period of standing still, or walking too slowly. I naturally move a lot when standing and talking in front of a group, and I always wondered why after being at Walmart I started feeling sick, disconnected, irritated, confused a bit, and just strange... it is because Walmart is a huge store, I am standing and walking slow for a lot longer than in other stores. This is why I hate being at Walmart! Now I know why, among other reasons :) It doesn't happen when running or brisk walking because my blood is being pumped out of my legs!

Insomnia- it has gotten very bad, but after talking to Dr. Joy and increasing my dietary salt intake to very high amounts I am actually getting some sleep for the first time in forever!

So because the brain is sometimes being hypofused many people can't get out of bed. There are a lot of symptoms like- loss of mental stamina, cold extremities, brain fog, and psychological burnout that are associated with POTS, and because some of the symptoms look like anxiety, and depression it is misdiagnosed. It can feel like a panic attack, and your mind may actually be calm. I always thought it strange to have panicky feelings, but also feel calm in my head. I have had anxiety around not being able to explain the symptoms.

Also, I am smart, and I remember things, but I can not always recall sequential events of my life history verbally without first writing it down and having something to look at. Like I forget large events such as surgery, when I am asked, until I think about it later. Like it would have been nice to tell Dr. Joy about the one outpatient surgery I had to clean out a staff infection in my knee.

I didn't realize until now, that it was probably significantly associated with POTS. I asked for them to give me an epidural for the surgery to clean out an infection in my knee because I wanted to watch (I know sick!). After that experience, I was grateful that I had natural births!

I started panicking (or it appeared like a panic attack) and having breathing difficulty as soon as the medicine went in my back. They sedated me, but after the procedure, I woke up in the operating room and looked at the blood pressure monitor and saw 75/15, the nurse saw my worried look and said "that's not right!" and I passed out again, and woke up a couple of hours later.

The next few days I had breathing problems, and panic like reactions that i could not explain. I believe now, it was related to the medication causing severe hypovulemia, and I was actually experiencing such low blood profusion, that my brain was not being oxygenated correctly.

I also can not take medications that I now realize probably the reason, is because I experience too much vasodialation, and low blood profusion.

The medication that i have found that works, works right away, or not at all. People have thought I was crazy, but the reason is that the medications are increasing my orthostatic pressure, which allow me to stand up and not lose energy throughout the day, instead of the things they are normally used to treat!

I won't go into my whole life, but throughout my life I have had these strange sensations, and panic-like reactions, and now that I think about it usually happened after being out in the heat, probably drinking water but not enough salt, and more often while on the lake or doing water activities, to amplify the sodium loss! People thought I was doing it for attention, or having a panic attack. It was neither! I was likely very hyponatremic, and have since learned that always adding salt to my water, prevents this, and minimizes the panic feelings.

The most effective treatments are salt, exercise, caffeine, water, and stress management. Interesting that i have been intuitively drawn to all these things, and I can't tell people why I like running, I just do, but there is probably a physiological reason why.... My body is actually running better while I am running! I actually think more clearly, more creatively, and get a lot of my ideas while I am on a run. I have more spiritual moments while running. I have too much anxiety sitting because of this reaction, and it is hard for me to feel grounded while sitting in a church, or classroom. I feel more spiritually connected while running in the mountains, and partially probably because my brain is just working better and able to relax.

So I just wanted to write this, because I have been invalidated, and even harmed in some cases, from people not understanding my symptoms. I believe it may be a large factor in having struggled with an eating disorder for so long. Even after I talked to Dr. Joy, people who have no knowledge of my history, started telling me I must have the wrong diagnosis, and I should not trust this Dr.! Why? Everything she said made sense, no one else in my life has given me a diagnosis that makes sense. I have tried to fit myself into differential diagnosis, that don't seem quite right. This one fits! And almost too much!

I never looked into it before I researched this but I have all the symptoms of restless leg syndrome, feelings of fear, even when I am not afraid, feeling separate from everyone- none of these were a psychological disorder, they are all associated with low blood volume, and low sodium balance, but everyone wants to put you into a mental diagnosis, and so you actually do start having anxiety because of it!

So now I am figuring out the sodium issue, and having better running experiences, I hope I can continue to find things to improve the symptoms, and get back to being able to perform and improve at the level I want to. But now you know, my drive to run is probably actually preserving my ability to function, because it would be hard for me to get out of bed otherwise. Managing the symptoms usually keeps them from getting worse, offers improvement, and sometimes gets rid of them. Although, with my history, they are unlikely to all disappear, but at least be manageable with the proper treatments.

The biggest one, is I do have to take more daily sodium in than I thought was humanly acceptable! Forget low-sodium diets! I can't get enough basically. I have to talk more with Elena about it still, she is on vacation, but for now, I am doing over 5000mg per day and adding an additional 1000-2000mg for every hour I exercise, especially in the heat. I am doing heat training carefully to improve my ability to run in the heat, and also figure out more specifically how to manage my need to drink salt water, and in what concentration! In general, I am finding I need to have some electrolytes in my water all the time, or water by itself is dehydrating, and makes the symptoms worse!

So bring on the salty food baby!


  1. Holy cow...This sounds alot like me!!!!! I have been dx'd with Lyme Disease, CFIDS, and HAshimoto's but am seeing and Endocrinologist in a few weeks as things are just not right...I think I am going to mention this to her...

    One thing I have found that works dehydration-wise is coconut water. I have tried EVERY sport drink on the market and either they make me sick, or light headed, or just taste awful and don't work. I drink it when I run AND when I don't. Its not cheap, but if you can order it by the case or through a coop, its a little better.

  2. I should say, I have no idea if I actually have the associated disorders. I was just reading the ones that were associated, and looking at the cross-over symptoms.

  3. Wow! This is very, very interesting to me. Thanks for sharing the information. I have a daughter that has vasovagal syncope and she has been told to get enough sodium every day or else she passes out (she has really scared us a few times). I was reading this post wondering if she might have POTS too. Lots to think about. So thanks.

    I am happy you are finally understanding what is happening to your body and have that validation!

  4. And don't take extra potassium! I am having problems from taking Scaps over that last few days. I am hoping this is not actually Addison's disease.

  5. Do you suffer with extreme headaches?

  6. I have, but the fluid balance issue is helping that a lot.

  7. I am so grateful for you posting this! I have been diagnosed with neurocardiogenic syncope, which is basically fainting from the low blood pressure, but that didn't explain my insanely high pulse when I run or feeling like I've gotten hit by a bus when I wake up every morning and the insomnia. This is so much validation that I'm not crazy or even worse, just shear lazy. Thank you so much for posting.

  8. This last July I became quite sick with POTS so that I was unable to work for about two months. Most of the time I was of course nauseous, dizzy, lightheaded with headaches, but it was worsened terribly by the meds I was given like valium and lexapro. Many of your symptoms are the same as mine, but I don't know about running since I have been too chicken to try it. Have you checked your HR while running? If I simply strain somewhat while standing like perhaps shovel some snow my heart rate goes up to about 176. There are many places online to go and meet other people with POTS or dysautonomia. I like the article posted on "things that helped me with pots recovery"
    Take care and thanks for posting this out here.

  9. I have had to work on the heart rate issue. Regular conditioning has helped me. I only have problems with heart rate now on very steep hills or in the extreme heat. However, it has gotten better. I have found that taking B vitamins, and adrenal gland supplements have helped a lot, and I no longer need abnormal amounts of salt most of the time. My body has started to normalize quite a bit.

    Partly I have a severe trauma history, and I started doing emotional work on my trauma. That has helped a lot of the physical symptoms as well. There is a lot to stored emotional baggage!

  10. I have been recently diagnosed with POTS after a lifetime of being diagnose with everything from MS to a stroke! After I did some reading on it, so many things have fallen in place for me! It was like taking a huge relaxing breath! One thing that has helped me tremendously is wearing compression stockings and another is drinking at least 40 oz of sports drink a day and increasing my salt. Good luck to you and I hope you learn more on how to make your life easier to deal with. :-)

  11. I was just diagnosed with POTS and I am seeing dr Joy this month. Thanks for sharing so that I could find this doctor.

  12. I crossed the country on my adaptive cycle after an anoxic brain injury that I think caused my dysautonomia and p.o.t.s. I have to eat and take more salt and pills to keep my bp up than I thought was humanly possible. I exercise regularly to constrict the blood vessels so the blood does not pool in my legs and abdomin. I know EXACTLY what you mean about standing in Walmart. It's not Walmart per se, but standing.

    Also the feeling that your legs are being poked by a thousand needles. If you notice carefully, it is always the same places, indicating it is not a skin sensitivity, but nerve issue.

    So, the pace maker helps me from bottoming out but spike way up about 160 - 180 20 x every 3 months. No reason for SVT's.

    But the blood pressure is way low, and temperature regulation is a bear. I love to ride my cycle and I believe in exercise and nutrition. I am very encouraged to see that you are so active. I know how difficult that is. The last week has been quite difficult and the heat coming up is going to be a bear.

    Thank you for sharing it helps knowing you I am not alone. I had no idea there was any correlation between POTS and arnold Chiari if there is any.