New member- Teenager with POTS

[Gabe15024]

Hello, 

I am 15 years old and I was diagnosed with Postural Orthostatic Tachycardia Syndrome this past March, and have had the clinical symptoms of this syndrome since June of 2018. 

In June of 2018, I was preparing for final exams for my last year in middle school. I will never forget that Saturday in June when my life changed forever. While I was studying I noticed this strange feeling in my beck/neck area, and it almost felt like tingling or “an electric shock”. The only way I could describe this feeling was “I was going to pass out”.  After this event, I became so weak I couldn’t leave the couch, and I kept having these “attacks” of just feeling almost disoriented. The following Monday, I was taken to my pediatrician and he diagnosed me with a 
Virus and instructed my parents and I to keep track of my blood pressure. However, my symptoms from this “virus” never got better. 

A few weeks later, I went back to my pediatrician to get answers as to why I was not getting better, and the doctor decided to run blood tests. On July 12, 2018, my doctor called and said I had tested positive for mononucleosis, but he said it was “in its late stages” and that it was a recent or past infection. However, during this time of being diagnosed with “mono”, I noticed my heart rate was very fast, especially on standing. I was aware of POTS from my readings on medical conditions and illnesses. During this particular summer, I remember standing up to go outside and my heart rate would be pounding. However, I did not report these symptoms to my doctor as it slipped my mind when appointments came up for my mono checkups. 

In the early morning hours of July 25, 2018, I woke up drenched in sweat, having a sense of tremor or anxiousness, nauseous, trouble breathing, and it felt as if my throat was closing off. I was taken to the emergency room where I was given fluids and told it was just the mono. As July turned into August (around two months since my initial symptoms), my “mono” was not getting any better, I was still extremely fatigued, and I returned to school struggling through each day. During this time, I developed anxiety and depression from being sick for so long. New symptoms also started to appear such as light sensitivity, blurry vision, brain fog, derealization (caused by the brain fog and cloudy thinking), continued fatigue, and sleeping problems. 

Fast forward to February 2019, I was no better. This was 8 months after my initial onset of symptoms. Frustrated, I went back to my doctor and he was concerned. He ran another mono test, looking for “chronic mono”, thyroid tests, and checked my vitamin b level. All my blood work came back fine, however, the mono test showed I was positive for a current ongoing infection. This was a very interesting finding as the past bloodwork from months ago showed the mono was not a current infection, but a recent or past infection. Lacking any answers, my doctor referred me to an infectious disease doctor.  

Fortunately, the infectious disease doctor I saw in March of 2019 was experienced in pediatrics, and had just transferred to a hospital near me from the Mayo Clinic. Within the first 10 minutes of the appointment, he already knew the diagnosis. Postrual Orthostatic Tachycardia Syndrome. After checking my pulse while laying and standing, I was officially diagnosed. However, to be sure, he ran multiple rounds of blood work checking my immune system function. All this bloodwork came back perfect. I have been under his care and a cardiologist since. The treatment plan established included drinking lots of water, eating salty foods, and exercising. 

 

8 months later, my orthostatic tachycardia is completely gone thanks to exercise, diet, and determination. Has anyone else had high mono levels with pots? Thanks 

[Random-Symptom Man]

Welcome @Gabe15024. I’m glad to hear that you are feeling better.
 

I have slightly high Epstein Barr Virus compared to normal, but it isn’t considered high enough to be described as chronic Mono Barr. EBV is the mono disease, just At lower levels.

Many people get Dysautonomia after an infection of one kind or another. Some people can recover quickly from the original illness, and still have prolonged Dysautonomia symptoms. Some people manage their Dysautonomia symptoms faster or slower, Or not at all. Some people never have symptoms again. Others do.
 

I hope you continue to be symptom free.

[Jwarrior77]

Hey @Gabe15024 I just turned 19 and got Pots back in May from what I believe to be some sort of virus. I don't know why my doctors never tested for what it could be. I suspect Epstein Barr but I wouldn't know. 

That's great to hear that your treatment actually seemed to get rid of the orthostatic tachycardia. My question is do you still have other symptoms that didn't go away or are you more or less completely healed?

[Gabe15024]

On 12/15/2019 at 10:43 PM, Jwarrior77 said:

Hey @Gabe15024 I just turned 19 and got Pots back in May from what I believe to be some sort of virus. I don't know why my doctors never tested for what it could be. I suspect Epstein Barr but I wouldn't know. 

That's great to hear that your treatment actually seemed to get rid of the orthostatic tachycardia. My question is do you still have other symptoms that didn't go away or are you more or less completely healed?

Unfortunately, I do still have symptoms that didn't go away. My main symptoms right now are: Bad brain fog (If I didn't have this horrible brain fog I would actually be very close to getting better), depression, vision problems, fatigue, and some lightheadedness. 

[Pistol]

9 hours ago, Gabe15024 said:

My main symptoms right now are: Bad brain fog (If I didn't have this horrible brain fog I would actually be very close to getting better), depression, vision problems, fatigue, and some lightheadedness. 

@Gabe15024 brainfog, fatigue and depression are unfortunately common symptoms of dysautonomia and for many improve with medication and lifestyle. I take SSRI for POTS which also helps with the depression and I take Ritalin for the fatigue ( with good effects and no side effects ).  You mention lightheadedness - are you on any cardiac meds that could help with this? Are you following the usual recommendations of increasing water, salt and wearing compression hose? 

Another way to combat all of these symptoms for me is to exercise and not stay in bed, despite how bad it gets sometimes. The longer I stay inactive the worse the symptoms your describe become. 

[Gabe15024]

12 hours ago, Pistol said:

@Gabe15024 brainfog, fatigue and depression are unfortunately common symptoms of dysautonomia and for many improve with medication and lifestyle. I take SSRI for POTS which also helps with the depression and I take Ritalin for the fatigue ( with good effects and no side effects ).  You mention lightheadedness - are you on any cardiac meds that could help with this? Are you following the usual recommendations of increasing water, salt and wearing compression hose? 

Another way to combat all of these symptoms for me is to exercise and not stay in bed, despite how bad it gets sometimes. The longer I stay inactive the worse the symptoms your describe become. 

Currently, I'm not on any cardiac medication. My current treatment plan is water, salt, and exercise. The exercise seems to be the most effective treatment of the symptoms, and I also attribute exercise to the lessening of the orthostatic tachycardia. Since being diagnosed, I have worked to lose around 40 pounds (I think lack of activity, mono, and being overweight contributed to me developing POTS). Around June I began a low carb diet which improved my tachycardia and reduced some of the symptoms. I have worked up to running a mile a day (which has, unfortunately, worsened the fatigue) and I weight lift. The symptoms of POTS have affected my daily life, but I know I'm doing better and remember there are many people with more serious symptoms. 

[Pistol]

@Gabe15024 - good job on loosing weight and following the treatment plan! -- I am wondering if - since you mention the running has worsened your fatigue - it might be better to either change to a different exercise routine, run less or mix it up with different exercises a bit more? I have learned in my own dysautonomia life that there are certain exercises that USE UP energy and others that GIVE energy. For example - anything upright makes me worse but a rowing machine is great for me, so is weight lifting (minimal, just for joint health) and certain stretches. 

46 minutes ago, Gabe15024 said:

The symptoms of POTS have affected my daily life, but I know I'm doing better and remember there are many people with more serious symptoms. 

You can be proud of yourself - dealing with the symptoms of dysautonomia is frustrating and difficult but keeping them under control is a big accomplishment!!! Good job!

[Gabe15024]

15 hours ago, Pistol said:

@Gabe15024 - good job on loosing weight and following the treatment plan! -- I am wondering if - since you mention the running has worsened your fatigue - it might be better to either change to a different exercise routine, run less or mix it up with different exercises a bit more? I have learned in my own dysautonomia life that there are certain exercises that USE UP energy and others that GIVE energy. For example - anything upright makes me worse but a rowing machine is great for me, so is weight lifting (minimal, just for joint health) and certain stretches. 

You can be proud of yourself - dealing with the symptoms of dysautonomia is frustrating and difficult but keeping them under control is a big accomplishment!!! Good job!

Yeah, I'm trying to re-work my exercise plan. I haven't ran in a few days and I already feel a lot better. Although, I know it's important to keep up the exercise so I may add in different activities. Thank you!