Symptoms

Symptoms

POTS is a type of dysautonomia (malfunction of the autonomic nervous system). All Postural Orthostatic Tachycardia Syndrome (POTS) patients experience postural tachycardia. Other than that, symptoms vary person to person. This is why it often takes patients a long time (years) to get a diagnosis and patients will often get wrongly diagnosed with a different condition than POTS.

Prior to the correct diagnosis of POTS, I was diagnosed with depression, chronic tonsillitis, hormone imbalance, and Chronic Fatigue Syndrome. Finally, after five years of searching a doctor noticed my heart rate tended to be upwards of 100 when I was in the office. After confirming I’m not afraid of coming to the doctor (could increase heart rate) she referred to me to a cardiologist where I FINALLY got an answer to some of my symptoms. The explanation (autoimmune disease) for the fevers and sore glands wouldn’t come for another few years after my POTS diagnosis.

At times during my 5 year search for an answer, I would wonder if it was all “in my head”, but really felt something was wrong. When you go to a new doctor who makes you feel this way, don’t be discouraged. An important step I took was; I went to a psychiatrist to confirm I have no psychiatric conditions. I brought the psychiatrist doctor notes with me and from that point on, no doctor ever suggested depression/anxiety as a possible cause of my symptoms. When I doctor is dismissive of my symptoms, I have found it helpful to ask if there are tests he/she could run, no matter how left field they may seem. Also ask what they would do if they were in your situation. This helps remind the doctor you are suffering and may make the doctor put himself/herself in your shoes and consider your situation differently.

Never stop searching for an answer if you feel your diagnosis is wrong.You know your body better than any doctor.

Based on my research, these symptoms seem to be the most common amongst people with POTS.

  1. tachycardia

  2. arrhythmias (irregular heart beats)

  3. lightheadedness

  4. dizziness

  5. fainting/near fainting

  6. generalized weakness

  7. palpitations

  8. fatigue

  9. exercise intolerance

  10. heat intolerance

  11. nausea and/or vomiting

There are many other symptoms. Perhaps the symptoms are dependent on what part of the autonomic nervous system (other than the part that controls heart rate) is malfunctioning most. I don’t really know, all I do know, is that POTS symptoms vary greatly!

  • inadequate memory
  • tremor
  • shortness of breath
  • loss of appetite
  • swollen nodules/lymph nodes
  • chest discomfort or pain
  • loss of sweating
  • excessive sweating
  • nausea
  • abdominal pain
  • diarrhea
  • constipation
  • bladder dysfunction
  • sleep disorders
  • headache/migraine
  • anxiety
  • reactive depression (occurring as a result of the illness)
  • light sensitivity
  • food sensitivities
  • weight loss

The Autonomic Nervous System (ANS)

POTS is a malfunction of the autonomic nervous system(ANS). The technical term for when the ANS is malfunctioning, is dysautonomia. Learning a little more about all the autonomic nervous system controls, makes it easy to see why POTS comes along with so many symptoms.

Your autonomic nervous system is responsible for body processes you do not control. This is why there are so many symptoms associated with POTS and it is easy for doctors to overlook. As you read the body functions the ANS is responsible for, it easy to understand the amount of symptoms that can be caused by POTS.

Some of the things your autonomic nervous system controls include:

  • the heart
  • glands
  • oral/nasal mucus secretion
  • full digestive tract
  • the liver
  • the kidneys
  • adrenal medulla
  • helps body respond to stress
  • heart rate
  • blood pressure regulation
  • the release of neurotransmitter (brain chemical) acetylcholine
acetylcholine is responsible for…
    • adequately functioning memory
    • the production of dopamine (a “feel-good” neurotransmitter)
Through nerve communication….
    • activates heart cells
    • lessens heart tissue contraction
    • helps nerves communicate with one another
  • The release of the neurotransmitter norepinephrine which is responsible for:
    • heart rate
    • blood pressure
    • blood sugar levels
    • sleep regulation
    • learning
    • it is a stimulating neurotransmitter
    • low levels lead to memory problems and depression
    • attention

That is a long list of body processes. Any number of them being out of whack, could really make life uncomfortable. Like I said earlier, I wonder if the wide variance in symptoms seen in POTS, aside from tachycardia, had something to do with what part of the ANS is malfunctioning most. I don’t really know for sure. If you have any thoughts or additional info, please leave me a comment!

22 thoughts on “Symptoms

  1. Thank you for putting up this info, I didn’t know abdominal pain and nausea were related, I’ve had those for a while and didn’t know why, I will have to look into that.

    It is important to get the depression idea out of a doctors head, I got treated for it when they claimed tachycardia was panic attacks, I simply could not get them to listen to me. Thanks to the pills they gave me to treat “anxiety/depression” I didn’t have my BP crashed and I went to a new doctor, he examined me (the other doctors didn’t) and 1/2 hour later I was in a cardiologists office who immediately took me off them. A few weeks later I had an OI diagnosis, a script for Floinef, maneuvers to manually slow my heart rate and vindication. The “depression” nonsense has languished at the bottom of my file ever since. Questioning someones sanity when they are sick and asking for help has to be one of the worst things to do to someone and it is not something you want on your file, it’s just plain laziness.

    You’re right, when something is wrong you do just “know”. I sought answers for symptoms that first showed up 20 years before I was diagnosed, in the mean time I had falls and once I passed out driving (no warning), not to mention the discrimination and aggravation from hospital staff who thought I was a histrionic and treated me like I was putting it on, 20 years, I really do think the medical profession can do better than that.

    Like

  2. I was just diagnosed last week….it’s been 6 years. I am older though than most patients…49. And, instead of my BP going low, it spikes when I am up. I have my first appointment with a cardiologist next week. I don’t know how much she knows about POTS, but I am going to find out! It’s been hell so far…but, your site is making it easier. Thanks! 🙂

    Like

    1. I’m sorry to hear you have POTS, but I am happy you’ve gotten a diagnosis and my blog is helpful. I’m not sure if you already know this, but high blood pressure isn’t uncommon with POTS patients and can be part of a type of POTS called Hyperandrenergic POTS.

      Like

  3. Jackie, I was diagnosed with POTS 6 years ago and have had such a horrible time finding a doctor who knows much about it. My caridiologist sent me to neurology who sent me back to cardiology. My symptoms range greatly, and when I go through flares it’s physically and emotionally devistating. Right now one of the most annoying, besides the heart rate, is improper blood flow to my hands and feet that causes them to turn bright red and feel very hot and tingle. As well and being extremely fatigued and dizzy. Have you personally or heard of anything that helps these besides the sodium and excersize? My beta blocker seems to make me even more tired.

    Like

    1. I’m sorry to hear you’re having such a rough time!

      Biofeedback has been helpful for me for getting blood circulating to my extremities. It only helps while I am doing it, but that is better than nothing! If you use the drop downs at the top of the page, there’s a page full of my experiences at The POTS Treatment Center which focuses on biofeedback for POTS.

      Beta blockers do tend to cause fatigue. You could try different beta blockers to see if a different one may be a better fit. I take Propanolol 10mg 2-3x/day. Some days, I just put up with the tachycardia rather than take my midday dose. The doctor said this was fine to do.

      With the tingling (a symptom I don’t personally have)… Could you be experiencing neuropathy? Have you looked into Mast Cell disorders? Have you tried compression wear?

      Like

  4. I’m 29 and a guy! I got diagnosed with this at 26 after a set of really strange circumstances and after a strong bacterial infection I passed out and woke up with POTS! For 3 years I managed it really well to the point where I had a few days where I didn’t even know I was ill, but recently I got dehydrated bad and now I’m feeling nasty symptoms all over and stuck on square one lol. Id love to talk to anyone who has it, if you guys are looking for a friend or someone to chat to – add me on skype would love to discuss more about this illness with yall. I’m from Sydney Australia by the way

    Slype: Krassimir.Vitchev

    Thanks
    -Kris

    Like

  5. Glad to find this blog! I’ve found several good ones, and I’ve really been searching for more positive ones, I know this is hard as any chronic illness but I get so depressed reading some of the other stuff/: gotta have hope(: I figured out I was actually born with a messed up nervous system, possible histamine intolerance, but at age three was given antidepressants and anti-anxietys to control all my symptoms they contributed to well..anxiety. At 3??? All these years, I’m 23 now the medication has done pretty well with suppressing a lot, but last year, after 2 years of extreme stress and a bout of bronchitis. BAM! Medicine stopped working completely, Pots, dysautonomia, the whole 9 except vomiting/: anyway, slowly getting better, but still got a ways to go and things to figure out in hopefully healing eventually. Love this blog, I think you’re one brave chick and I pray you get your answers about whsts still going on with you!

    Like

  6. Love your blogs! They’re helping me make sense of things, as the lightbulb finally goes off on why I have been sick and non-functional during my 52 years. My bp tends to go dangerously high, and drugs just make me sicker. I have a long list of diagnoses, and none of them explaining anything and no doc will look beyond the surface. Because of 23andme and the internet, I have self diagnosed with ASD, EDS-V, POTS, histamine / tyramine intolerance’s, tons of methylation defects, and multiple food/chemical sensitivities. I suspect a few more disorders, but it takes time. The more people write about this online, the more awareness grows and the easier it may be for the next person to be diagnosed in time to have a life.

    Like

  7. Hi, also I was wondering if in your research/experience you have heard of frequent waking with strong/fast heartbeats, this only happens when I am asleep, it is not really fast or really hard, but enough to be uncomfortable and wake me up, this will happen several times a night, it is not anxiety and I am not having bad dreams, I though maybe low blood sugar, so have experimented with eating a small high fat/protein snack before bed and also tried not eating before bed but it does not make any difference, I have gone moths without this symptom but it comes back seemingly out of nowhere , I have read a few things on your blog about noradrenaline ? Maybe thinking it is something related to that, but I am on a beta blocker which I thought was supposed to block adrenaline, any suggestions would be appreciated, even if your not sure 🙂

    Like

    1. You guessed what I would have guessed! Give hyperandrenergic state (although with this characterization in POTS, this state is not constant based on what I’ve read) and norepinephrine surges during sleep a Google search and see what you think. That’s what this sounds like to me. I’d definitely bring this up to your doctor. Beta blockers do not block your all of your adrenergic receptors that norepinephrine can effect.

      Like

  8. I just found your blog! Thank you so much for all of your awesome info! I am recently diagnosed and wheelchair bound. It’s been a long struggle to get a correct diagnosis – as I’m sure many POTS patients will also say – yet I’m still adjusting to everything. I’m already on beta blockers and taking in extra large amounts of sodium PRIOR to diagnosis yet still can barely get out of bed and must use my wheelchair. I’m at a point where I am going to likely have to quit my job as well due to disability. Seeing your blog and your Mayo treatment plan gives me hope that things can at least get better. Hope that you are feeling better!

    Like

  9. Wow! Amazing information. I had a test done by my physician and it was done supine but not at all the way your test was done. They did not do a sitting test so now I wonder if I had the right testing. I am much older than the rest at 57 years. I used to have 60 BPM and now I am at 90 BPM resting. I have excessive sweating & it is embarrassing to be honest. I was DX at Duke with peripheral neuropathy years ago. Is there some link? Thank you SO much for writing this b/c now I can ask for proper tests.

    Like

    1. Thanks for letting me know it helped.

      Yep – there is a definite link between neuropathy and dysautonomia! Small fiber peripheral neuropathy can affect small fiber sensory nerves or small fiber autonomic nerves. Autonomic neuropathy is a root cause of autonomic dysfunction and POTS. In the post I am linking, under “new nerve pain” I have some links to learn more about neuropathy. https://lethargicsmiles.wordpress.com/2016/06/18/lack-of-posts-brought-to-you-by-poor-health-and-insurance-companies/

      Which test are you referring to about being done entirely supine?

      Like

Your turn!

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s