electricpower177 Posted December 15, 2017 Report Share Posted December 15, 2017 I have following symptoms since 5 years right now im 20 yrs old:- 1.dramatic increase in pulse rate on standing from lying position,black vision and foggy brain sometimes. 2.heart palpitations on climbing stairs or running 3.exercise intolerance 4.unexplainable random tachycardia. 5.extreme fatigue all day. I went to a cardilogislt recently and he did ECGs,doppler echocardiography,24 hrs holter,thyroid test,cbc,electrolytes test,urynalsis and everything came back normal.My b.p is normal and my bmi is 21.7. Is there anyone here with these symptoms who was diagnosed with POTS or IST? Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted December 15, 2017 Report Share Posted December 15, 2017 Welcome to the forum. I was diagnosed with POTS in 2003--your symptoms sound consistent with my experience. I was diagnosed after a Tilt table test. Prior to that I had the tests you list and they basically came back normal. I had some odd electrolyte imbalances and I have thyroid disease which complicated the situation for me. Here is some overview information about POTS: https://www.dinet.org/content/information-resources/pots/pots-an-overview-r95/ Postural orthostatic tachycardia syndrome is defined by excessive heart rate increments upon upright posture. A person with POTS will experience heart rates that increase 30 beats or more per minute upon standing and/or increase to 120 beats or more per minute upon standing (Grubb, 2000). These exaggerated heart rate increases usually occur within 10 minutes of rising. You can find more information under "Information Resources" in the menu at the top of our page. Quote Link to comment Share on other sites More sharing options...
electricpower177 Posted December 15, 2017 Author Report Share Posted December 15, 2017 1 hour ago, MomtoGiuliana said: Welcome to the forum. I was diagnosed with POTS in 2003--your symptoms sound consistent with my experience. I was diagnosed after a Tilt table test. Prior to that I had the tests you list and they basically came back normal. I had some odd electrolyte imbalances and I have thyroid disease which complicated the situation for me. Here is some overview information about POTS: https://www.dinet.org/content/information-resources/pots/pots-an-overview-r95/ Postural orthostatic tachycardia syndrome is defined by excessive heart rate increments upon upright posture. A person with POTS will experience heart rates that increase 30 beats or more per minute upon standing and/or increase to 120 beats or more per minute upon standing (Grubb, 2000). These exaggerated heart rate increases usually occur within 10 minutes of rising. You can find more information under "Information Resources" in the menu at the top of our page. How do u get thyroid problem pal?and odd electrolytes like sodium and pottasium are caused by adrenal gland or kidney disorder i suppose.U know my friend no one understands my situation everyone used to call me lazy or clumpsy even my parents..its so painful..😢😔 Quote Link to comment Share on other sites More sharing options...
FSKhan Posted December 15, 2017 Report Share Posted December 15, 2017 Hello, I am new to this, but in regards to your question about POTs or IST? I have been diagnosed with POTs and IST (POTS/IST). This is due to a positive tilt table test, and heart monitors and exercise tests showed inappropriate sinus tachycardia, even whilst resting. POTs was first diagnosed, then a year later IST was diagnosed. I take ivabradine for the IST as beta blockers didn't work. I also get chest pains, especially during the winter so i was prescribed Glycerol Trinitrate Spray (GTN) and take that when needed. Quote Link to comment Share on other sites More sharing options...
TCP Posted December 15, 2017 Report Share Posted December 15, 2017 Yes, symptoms as stated. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted December 15, 2017 Report Share Posted December 15, 2017 I have Hashimoto's thyroiditis. It may be unrelated to POTS, but when my thyroid levels are off it can set off POTS symptoms, for me, at times. I can have low potassium (slightly low). My specialist says that some women are prone to this. Again it may be related to POTS, for me, or may not be. It does seem though that when POTS acts up, for me, my potassium is slightly low. My doctor has also said to be careful not to over-do salt intake bc it can cause wasting of potassium. I have had some low sodium readings at times too that no one could explain. Yes it is common for patients with POTS to be misunderstood as lazy or clumsy. It's considered an "invisible illness"--b/c the patient may appear to be well but feel very poorly. 7 hours ago, electricpower177 said: How do u get thyroid problem pal?and odd electrolytes like sodium and pottasium are caused by adrenal gland or kidney disorder i suppose.U know my friend no one understands my situation everyone used to call me lazy or clumpsy even my parents..its so painful..😢😔 Quote Link to comment Share on other sites More sharing options...
electricpower177 Posted December 16, 2017 Author Report Share Posted December 16, 2017 6 hours ago, MomtoGiuliana said: I have Hashimoto's thyroiditis. It may be unrelated to POTS, but when my thyroid levels are off it can set off POTS symptoms, for me, at times. I can have low potassium (slightly low). My specialist says that some women are prone to this. Again it may be related to POTS, for me, or may not be. It does seem though that when POTS acts up, for me, my potassium is slightly low. My doctor has also said to be careful not to over-do salt intake bc it can cause wasting of potassium. I have had some low sodium readings at times too that no one could explain. Yes it is common for patients with POTS to be misunderstood as lazy or clumsy. It's considered an "invisible illness"--b/c the patient may appear to be well but feel very poorly. What were ur electrolyte levels plz tell?Adrenal fatigue also causes pots,i read somwhere and has fluctuating symtomps mainly of electrolytes. Btw whts ur age and gender?And how is ur life going with these problems?What r u pursuing? Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted December 17, 2017 Report Share Posted December 17, 2017 It was a long time ago now and I don't have the details handy. Just slightly on low side. I was tested for adrenal insufficiency and found not to have that. Adrenal fatigue is a concept that is treated by alternative doctors but from what I understand mainstream medicine does not recognize it as a condition. I am in my 40's, and a feel much better than I did in my 30s. Quote Link to comment Share on other sites More sharing options...
yogini Posted December 17, 2017 Report Share Posted December 17, 2017 Have you had a tilt table test? That is the best way to figure out if you have dysautonomia. Or you can measure at home if you tend to have a sustained increase in HR or decrease in BP upon standing. For many POTS patients all tests come back normal other than the tilt table test. You can try to get an appointment with one of the POTS doctors listed on the site. Quote Link to comment Share on other sites More sharing options...
electricpower177 Posted December 17, 2017 Author Report Share Posted December 17, 2017 26 minutes ago, yogini said: Have you had a tilt table test? That is the best way to figure out if you have dysautonomia. Or you can measure at home if you tend to have a sustained increase in HR or decrease in BP upon standing. For many POTS patients all tests come back normal other than the tilt table test. You can try to get an appointment with one of the POTS doctors listed on the site. I did it myself at home and bp and pulse rate both shoots up dramatically ...so i might be having hyperadregenic pots...i suppose! Quote Link to comment Share on other sites More sharing options...
yogini Posted December 17, 2017 Report Share Posted December 17, 2017 I would not guess about whether you have hyper POTS or not. But if your HR shoots up and stays up when you continue to stand for prolonged periods, this means you likely have POTS. I would ask your doctor for a TTT or switch doctors to someone who knows more about dysautonomia. Most cardiologists don't know enough Quote Link to comment Share on other sites More sharing options...
electricpower177 Posted December 17, 2017 Author Report Share Posted December 17, 2017 23 hours ago, yogini said: I would not guess about whether you have hyper POTS or not. But if your HR shoots up and stays up when you continue to stand for prolonged periods, this means you likely have POTS. I would ask your doctor for a TTT or switch doctors to someone who knows more about dysautonomia. Most cardiologists don't know enough Im pretty sure i have pots,heart rate goes like crazy on stading up for everytime,one time i passed out almost in my bathroom it was horryfing though,i also get random tachycardias,fatigue,dizzines throught all day which no amount of sleep or food can fix.Dysautonomia can lead to both p.o.t.s and i.s.t🙄 Quote Link to comment Share on other sites More sharing options...
bombsh3ll Posted December 17, 2017 Report Share Posted December 17, 2017 My symptoms fit yours and I have a diagnosis of POTS by one of the few POTS experts & researchers in the UK. My heart doesn't race at rest though. When I first became unwell I had electrolyte disturbance too - low sodium and high potassium. At the time this was attributed to having been started on an SSRI antidepressant (GP thought anxiety, I was sure POTS but took them due to evidence showing benefit in some with POTS, sadly not me), but I was later found to be producing virtually no aldosterone. This is the hormone that keeps salt (and water) in the body and lowers potassium, hence the electrolyte imbalance and low blood volume. In which direction were your sodium and potassium numbers off? Maybe look into seeing an endocrinologist and getting your adrenals tested (including aldosterone). I have normal cortisol BTW so not Addisons. Quote Link to comment Share on other sites More sharing options...
electricpower177 Posted December 18, 2017 Author Report Share Posted December 18, 2017 7 hours ago, bombsh3ll said: My symptoms fit yours and I have a diagnosis of POTS by one of the few POTS experts & researchers in the UK. My heart doesn't race at rest though. When I first became unwell I had electrolyte disturbance too - low sodium and high potassium. At the time this was attributed to having been started on an SSRI antidepressant (GP thought anxiety, I was sure POTS but took them due to evidence showing benefit in some with POTS, sadly not me), but I was later found to be producing virtually no aldosterone. This is the hormone that keeps salt (and water) in the body and lowers potassium, hence the electrolyte imbalance and low blood volume. In which direction were your sodium and potassium numbers off? Maybe look into seeing an endocrinologist and getting your adrenals tested (including aldosterone). I have normal cortisol BTW so not Addisons. My electrolytes are normal as follows:- Serum sodium=139 meq/l Serum pottasium 4.0 meq/l Serum chloride=100 meq/l Quote Link to comment Share on other sites More sharing options...
TCP Posted December 18, 2017 Report Share Posted December 18, 2017 16 hours ago, MomtoGiuliana said: Adrenal fatigue is a concept that is treated by alternative doctors but from what I understand mainstream medicine does not recognize it as a condition. Constant stress is believed to cause adrenal fatigue and many websites dealing with the adrenals mention this as a condition. Quote Link to comment Share on other sites More sharing options...
bombsh3ll Posted December 18, 2017 Report Share Posted December 18, 2017 Hi I m not sure which country you are in but in the UK those values are within normal ranges. I am a GP and our normal range for sodium is 135-145 meq/L, potassium 3.5-5.5meq/L and chloride 96-106 meq/L. Are these values after treatment? Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted December 18, 2017 Report Share Posted December 18, 2017 9 hours ago, TCP said: Constant stress is believed to cause adrenal fatigue and many websites dealing with the adrenals mention this as a condition. Agreed! From what I understand it is not an accepted medical diagnosis. Here is Web MD's take FWIW: https://www.webmd.com/a-to-z-guides/adrenal-fatigue-is-it-real#1 Before I was diagnosed with POTS I saw a naturopath, who diagnosed me with this, and recommended magnesium supplements and some other treatments. Some I was too scared to try particularly bc I was breastfeeding, what I did try was expensive but didn't help. Quote Link to comment Share on other sites More sharing options...
TCP Posted January 31, 2018 Report Share Posted January 31, 2018 I have secondary adrenal insufficiency and some websites about Adrenals/Addisons/Adrenal Crisis mention adrenal fatigue. Quote Link to comment Share on other sites More sharing options...
Samantha91 Posted February 13, 2018 Report Share Posted February 13, 2018 I had the exact symptoms as you did and I was diagnosed last year took me 7 years to get an answer as I live in Australia and everyone thought i was just depressed cause everything came back normal until I found a great cardio. I have autonomic dysfunction and IST. Hope you have some answers soon, if you need someone to talk to I’m here Quote Link to comment Share on other sites More sharing options...
Katia Posted September 20, 2018 Report Share Posted September 20, 2018 Hi Samantha, where are you in Australia? I am in the Northern NSW and only recently discovered I may have Dysautonomia. Quote Link to comment Share on other sites More sharing options...
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