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Pots syndrome? Help!
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Pots syndrome? Help!

Hello everyone, my name is Riss and I'm 19 years old. The past week or so has been a whirlwind for me. My story starts like this:

At the end of May, I came home after visiting my boyfriend for a week. During that visit, I had contacted a sore throat, but I'm not sure if that is related to the problem or not. I came home on a Monday and my sore throat symptoms were gone. On Thursday, I woke up to go out to eat with my mom and siblings, but I felt horribly sick as we left. At the restaurant, I threw up 2 times and threw up even more afterwards. It was very abnormal for me because normally when I get sick, I throw up once and then go about my day. This time was different because I could not keep anything down. On top of that, I was having occasional hot flashes after throwing up. The 2 days following that incident, I ate a little bit, but I still felt very weak. I mostly just stayed in bed. On Saturday night leading into Sunday morning, I was just sitting in my bed skyping my boyfriend and felt something very abnormal happen. As soon as we hung up, I noticed that my heart was beating fast. Very fast. As if I had just got done running a marathon fast. I was very confused and very scared. Why was this happening? I was just sitting down. My heart had never done this before. Was I dying? Was I about to have a heart attack? I told myself that it was probably just because my boyfriend and I had a fight that I felt this way, and tried to go to bed. I woke up a few hours later, Sunday afternoon and my heart rate was still very fast. My left arm was feeling weak compared to my right arm and I felt a little dizzy with stiffness in my neck and shoulders. Especially when shifting positions. I googled symptoms and felt that maybe I was experiencing a blood clot, since I take birth control, but I didn't have any redness or warmth in my arm or neck. Again, I kind of shrugged it off and went back to bed, intending to tell my parents the next day if it persisted. I woke up Monday morning feeling the same way, but it felt worse. I got up to go use the bathroom and I felt shortness in breath and almost wanted to faint. My legs were wobbly. I paniced and called my dad. When he came to see what I needed I asked him to feel my heart to see if he felt like it was beating abnormaly, he said that it felt rather fast and that I should call my mom, who is a nurse, and ask her about it. My mom made a doctor's appointment for the next day, as she didn't feel as if it was serious enough to go to the emergency room about. She brought home a blood pressure monitor and told me to take my blood pressure every hour. I did. It was low. It also said that I had an irregular heartbeat.

While at the doctor's I kept contemplating what had happened. I just didn't understand. I was 19 and, for the most part, healthy. I walked everywhere as excercise. I swam in high school and did various other activities such as choir and band. I had no previous heart trouble. I had an EKG done on my heart during high school after I had an incident while swimming. The EKG came back fine and the incident was confirmed to be just an attack of athletic enduced asthma. I had seziures as a child, but outgrew them later on, and I was diagnosed with anemia, social anxiety, depression, and bipolar. I had occasional occular migraines. Other than that, I was a fine, normal, functional teenage girl. Heart disease does run in my family, but I didn't think that I'd be at risk so young. I had cut back on eating fast food during high school, and I didn't really smoke except for the occasional hookah. I wasn't a heavy drinker, despite the fact that I went to a party school, and I was not heavily using drugs either. It just didn't make sense to me why I would be having this heart trouble, and everybody else around me, who were doing way riskier things with their body, were perfectly fine. The doctor listed to my heart and determined that I had a heart murmur, something that I had never had before and sent me to get admitted into the hospital overnight for further testing and observation. At this point, I could hardly even walk without my mom's assistance and had to be wheelchaired into the hospital.

Once at the hospital, they attached a heart monitor to my chest and took some blood work. I noticed that the heart monitor mostly showed a stable 80-90 heart rate, but whenever I would get up to use the bathroom, it would jump to 115-120. The blood work came up fine, so an electrolyte imbalence wasn't causing this. I ate my food and drank plenty of water hoping to re-hydrate myself. The next morning, I was ordered to get an echo, a chest x-ray, and a tilt table test. The tilt table test showed that whenever I stood up, my blood pressure would drop slightly, but my heart rate would skyrocket for a little bit, then go back down. The cardiologist came in to look at the results, but he didn't say much about a diagnosis. He just said that I needed to increase my salt intake in my diet and drink more fluids. O...kay... I did that for the rest of my stay in the hospital and they discharged me later in the evening. By this point, I was somewhat able to walk without assistance.

It's been 5 days since I've left the hospital and over a week since the sickness/heart trouble started. I've been drinking water and eating salty foods, just like the doctor said. We still do not have an exact diagnosis, but my mom did a google search a couple nights ago and came across a few articles on Pots Syndrome. We read it together and the symptoms do sound rather similar to mine. I don't have all of the symptoms, but some of them are present (heart rate, dizziness, pain/stiffness in arms and neck). Since drinking more water, some of my abilty to function has improved. I can walk without assistance and stand, though not for long periods of time. The dizziness has decreased a little bit both when I lay down, sit, and stand, though I feel it more when I stand. The heart rate still goes up while I'm standing, but otherwise, it hasn't been as much of a nuisance. The numbness and stiffness is still there, but there are times where it goes away and I cannot feel it. It's hard to tell without an official diagnosis, but Pots syndrome does sound like a very strong contender for what is going on with my body.
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I've continued doing research on Pots, and what I've found honestly scares the crap out of me. It's not fatal, but I've read so many stories and articles where it talks about people being unable to work and do normal, everyday activities. I've seen things saying that people can recover in 6 months and things saying that some people do not recover at all. I even saw one article where Pots led to even more severe health problems for a woman. I am very very scared if this is what I have. As I said before, I am 19 and my life is just beginning. I had so many plans for this summer and this year that I'm scared might not get to happen now. I'm a full time student at college. My college is about an hour and a half from my hometown, and I was preparing to get an apartment down there with some friends. The campus is very hilly so I'm now worried about what my scholastic future holds for me. I'm worried that having Pots will affect me living on my own and walking uphill to class. I don't want to bother my roommate and my boyfriend by them always taking care of me if the symptoms get bad enough. Plus, I can't afford to miss class if I'm bedridden cause of symptoms. Some classes have policies where you can fail if you miss so many days and it seems like Pots can cause issues like that. I've considered dropping out of school because of this. I was just starting to figure out what I wanted to do too. I was starting to seriously think about going to law school once I finish undergrad. I also wanted to study abroad and do other activities to get more involved at the school. I wanted to rush for a sorority this year and maybe join choir again or political clubs. I'm worried that this will prevent me from doing all of that. My plans for this summer were to get a job, get my driver's liscense finally, go to the beach, go to Kings Dominion, and visit my boyfriend again. Those plans are all now on hold. There are other things that I'm worried about too, as silly and stupid as they are. Will I ever be able to travel again? Or ride roller coasters which I love doing? I had a bucket list that included things like bungee jumping, but can I even do such activities like this? Will I be able to start working out more to tone my muscles like I planned on doing? And since I'm a college student, will I be able to go out to clubs and party like most of the other students? My boyfriend and friends all like to go out, and I don't want to be a bother on them if I can't go out dancing for one night. I loved dancing and I want to be able to do so again. I wanted to go to more concerts. Can I drink tea and pop ever again? I wanted to take a part time job as a model and promoter. Can I even do that now? I am so worried and scared that this will dibilitate me for life. I feel like it's not fair. I had just barely got a taste of true freedom and now it's being ripped away from me. My depression is coming back as I feel with worry of whether my dreams will ever be accomplished. I wanted to move to a city and be a wife and mother at some point. I'm scared that I won't be able to do that either. I also find it particularly odd that this would come up now. I had seen a neurologist for years until I stopped going last year because of school. This had never come up before. My childhood sezuires have been gone since I started high school. The EEGs proved it. I also had an MRI last year and there was nothing concerning about it. The neurologist said that I was fine and healthy. My examinations showed no signs of concern. Fast forward a year later and now I might have an autonomic disorder! It makes no sense. 

I guess I don't really have any specific questions. I came here for help because I am young, alone, and very scared. I feel like the youth has been ripped out from under me and that I am now a 70 year old in a 19 year old's body. I always said that I would prefer to die young and active while doing somthing fun, than die old and confined to a bed. The idea of being confined to a bed and unable to do anything is what scares me the most about this. I don't want to develop any more health issues because of this and I really just want to recover and get better. Once again, I'm not sure if I have Pots or not, but it sounds like it's a high possibility. I'm not sure if I have the strength and patience to battle this for years, especially with school being my main concern. I already signed up for my sophomore classes and I'm also worried that I might not be able to afford it since I'll undoubtedly have health bills. I have loans for school that I'll eventually have to pay back, but I can't do that if I'm unable to work. I really just want to be a normal young adult/teen again. This entire past week alone has felt like an eternity. I know I probably sound silly to the community on here, lamenting about school and petty things that only young adults really care about, but I need all the advice and support that I can get. I am completely alone in this battle and I have never met anyone with this consition beforw and I still don't know too much about it. My mom thinks that I'm being melodramatic, which I probably am, so excuse my ignorance about this topic. It's all brand new to me. I appreciate any help that this community can provide for me. <3 This syndrome certainly deserves for awareness! 
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I'm having trouble figuring out where to start. You have brought up a million and one issues ... you've got MY head spinning, hahaha. So let's BOTH take a deep breath!!

Now then, have you ever heard the phrase "putting the cart before the horse?" I don't think you're being melodramatic, I just think you're putting the cart before the horse, getting ahead of yourself, borrowing trouble from the future, etc. etc.  I don't think you sound silly either. I just want to help you narrow down the focus of your concerns a little.

This is not the right time to worry about an entire lifetime of severe illness! That takes a lot of jumping to conclusions to get there, and it's not helpful to get worked up like that at all. What is helpful is to focus on what you can do now.

1. Address your current symptoms.  You say the increased water is helping. You did not mention increasing your salt intake. It is important to do both. Even though people often think of salty foods as "bad" for you, salt is a necessary nutrient that helps your body to retain the water that you drink so it can boost your blood pressure. Water without electrolytes like salt won't help. If you are still having symptoms after increasing your salt and water, talk to your doctor about what other treatment options you have.  

2.  Exercise your legs. The stronger your leg muscles are and the more you use them when you're upright, the more relief you will get from these symptoms. If you tackle this now when it's just starting instead of letting the symptoms cause you to be less active, you will end up SO FAR AHEAD in the future. I cannot emphasize this enough. Swimming, rowing machines, recumbent bikes, things like that are all good if you're having trouble exercising upright due to symptoms initially.

3.  Try not to think a lot about the way your heartbeats feel. Concentrating a lot on the feeling of your heart pounding creates a feedback loop that can actually physically worsen your symptoms, I mean not make you imagine that they're worse, but actually make them worse. On the other hand, people who are better at keeping their minds off of the sensations end up having less severe or frequent symptoms. Likewise, it's good to take your blood pressure and heart rate once or twice a day, but taking it constantly can create a hyper-awareness that can worsen symptoms, so be wary of that.

4.  When you find your mind drifting into concerns about the future, have a sentence or phrase to repeat to yourself to bring yourself back to the here and now. Something like "I don't need to think What If, worry won't help anything." Then find something else to do to keep your mind busy like reading a book or watching a video.


Next time you see your doctor, you can ask if your tilt table test indicated POTS or not. Remember that the name of the diagnosis matters less than getting a handle on the symptoms themselves, which it sounds like you're starting to do.
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hi Riss, Heiferly's advice is very good, the only thing I would add after suffering for 5 years with POTS is compression stockings can be very helpful. I was diagnosed 5 years ago, and I started with the fluids and salt intake, Gatorade helped a lot I drink one every morning. V-8 juice is great for helping with salt intake and balancing out those times when you dont feel good. Definitely take your blood pressure and try not to focus on the speed of your heart rate... Leg exercise is awesome! I have a stepper and after almost 5 years of wearing compression stockings every day, I dont have to now. I bought a pedometer and started trying to get in 10000 steps every day, I am easily up to 15000 now most days without compression stockings... almost as healthy as I was before the episode that started my issues... So you are young and it is very likely that your body can heal itself! Hang in there, there are great people on here that give lots of good support!! Not everything works for everyone but start tracking your symptoms and what helps and you will see improvement!
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Hello Riss,
I hope your day is going better today.  I also have problems very similar to yours, and I happened to get onto the forum for some information myself, so I thought I would respond, as it was a recent post.  I started having problems at age 23 and am now 55!  The one good hope to have is that they say if you develop these conditions young, you may just improve and outgrow it.  I am just now after all these years seeing a doctor who specializes in autonomic dysfunction, of which POTS is.   Please don't wait as long as I did, because there is treatment and help out there, but from all the doctors I have seen in the past, it really has to be a doctor who understands these conditions.  You may have to travel a ways, but if you can do it, it would be worth it.   Even though you may have some bad days, hopefully you will have more good days, and it is those days you want to take advantage of.   Another good thing is to make "friends" with your condition, if that makes any sense at all.  Like Heiferly told you, which was such good advice, sometimes it is easier to accept it, let it go, and just give yourself plenty of leeway, as you know what you can and cannot do at a certain point.  As far as school and all your plans, you should try to go ahead, but also accept any limitations that may come up; just take it one step at a time and judge as you go along.   You can always revise things according to how you feel, but I understand your fears.  Also, there is a good thing about having conditions like these (if it is possible to say that), that you will be a much more appreciative person of all the little things and joys in life because you know how great it will feel to just to feel good whenever you do.  Everything else becomes so unimportant.  I'm sure just in the short time you have dealt with this that you have already learned that.   And keep the faith that this may just improve a lot of its own, as I said.   Another big thing I want to tell you, too, is that you will most likely come across people that do not understand, even doctors sometimes.  Don't let them make you doubt that your symptoms are real.   Your good friends will hopefully understand.  That has been one of the hardest things for me.  I pray that things will improve for you in the near future.  Take care of yourself.        
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Heiferly
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