Does this sounds like POTS ?

[r9c]

HI,i am 25 years old,for nearly a year now,i have been feeling lightdeaded daily,even sometimes siting down,but most of the time the dizzines gets worse when i stand for a long time or walk for a long distance and a result of this i cant really do sports like i used to do before.I had palpitations followed by dizziness,so far i have done an Echo last october 2009 and stress test ecg,24 hour holter and a tilt table test where my BP stays normal but heart rate increases from 90 to 130s during the test but ECG monitor shows sinus tachycardia and BP normal,so the cardiologist said its anxiety but i really dont think its anxiety.I had several complete blood count to rule out anemia and thyroid and even saw an endo which i am not sure..he said thyroid is normal after repeated test.I cant believed this lightheaded sensations can happen everyday and its  a struggle and i do not know wat to do..whether i go back to the GP or back to the cardiologist to run more cardiac test and which i don think they will be very pleased since i had a full cardio workup early this year and last year too.How i am going to convince the doctors and cardiologist that this lightheaded are real bothersome and even though i never fainted before,thanks god for that...its really hard to function at work

[LivingInHope]

The majority of people with POTS do NOT faint, though some do.  It's pretty plain the doctor did not know enough about it.  I have POTS, but when I get low ferritin, the tachycardia can get worse and the tiredness and the shortness of breath.  Please see PM for more info on POTS.

[Mom2four85]

I often say that a dr's "anxiety" cop out on anything is because they do not have a clue what is wrong and are too lazy to follow up testing or help a patient

the way they use it as a catch all for whatever ails us makes me frustrated at the medical community in general...it's one of my pet peeves about dr's :P

[r9c]

Thats right,Terrible right,i couldnt believe it.the doctor who took me seriously, i have seen is a lady neurologist as i explained to her my symptoms about feeling diZzy and straight away she took my bp while sittng down was 117/75 and when she ask me to stand and retake my bp it shows 90/70 straight away and she already suspect somethings wrong with the bp and wonder why the gp ask me to see a psychiatry instead of repeating the tilt test once more.Also my pulse race everytime i stand up and immediately feel more dizzy and had to sit down in order for my pulse to drop back to 75 like thar and when i stood up it went up to 100s.i

[bluewind95]

Oi, I HATE it when they just go "Oh, it's all in your head, srsly!"

Just because it's not a disease they understand doesn't mean it's all in our heads. We really do have these issues and we're not imagining it!

Though, in my experience, anxiety DOES increase dysautonomia symptoms. But it's not the cause... I wish people would understand that. Being told it's "all in your head" is an insult, feels like to me. It's like telling us that all this effort we're making we're just imagining it, it doesn't count, it's not real, it's an illusion. Makes me SO mad!

[r9c]

Hi,thanks for the info.
I was not aware that time back in May i think where i had my tilt table test,i remembered very clearly..when standing for around 20 mins..i saw my heart rate rises from 90 to 130s..and it lasted for like 5 mins..i was so dizzy that i told the nurse..but she look at the BP readings it was fine..like around 120/80,so the cardiologist wasnt concerned,as they keep saying u need a real low BP to faint.So after the test,i met the cardiologist and he review the tilt test with those long ECG papers,and said its normal,its anxiety and i actually believed them,lol..but after 5 months later till now..i just felt it wasnt anxiety after all,as i felt worse on lightheaded everytime i stand up or walk around,but most of the time i just ignored it as the cardiologist told me its anxiety.Maybe tommorow i am going back to see the GP and tell them about this POTS.what a mess..they once make me an appointment with a psychiatry because they told me i have a panic disorder..i was like i wasnt having a panic attack at all,lol..crazy isnt it? Just because they cant find any medicaly reason why i am still feelling lightheaded..so they said its all in ur head.

[LivingInHope]

I recommend you get a ferritin (iron stores) test, the best indicator of what iron is doing in your body, because I had symptoms in the past of iron deficiency where my CBC had not yet been affected.  While uncommon for men to have iron deficiency, it still can happen with inadequate iron intake, malabsorption issues, or gastrointestinal bleeding (which you don't always know you have, that's why they do occult, meaning hidden, blood stool testing).  Iron deficiency can cause an increase in heart rate and dizziness.

The doctor who conducted your tilt table test- I question whether he/she fully understands POTS.  Sinus tachycardia IS the type of tachycardia one experiences in POTS.  And the heart is racing to maintain blood pressure so that one doesn't pass out.  If you have the hyperadrenergic form of POTS, like I think I may, your body can even overshoot on blood pressure and you can get a spike in it with standing.  It is true that there are those who don't understand this type of orthostatic intolerance properly and write it off as anxiety.  I had my grandpa written off to go to a psychiatrist when he really had a BRAIN TUMOR.  I would recommend you try to find someone who specializes in POTS, but it can be a difficult task.

I also recommend you ask your GP if you can get an event recorded holtor monitor test, where you press a button each time you feel like your heart is racing and write down what you were doing at the time.  If you happen to have a very anxious period during the test, you might even record that so they can compare your standing tachycardia with it.

[r9c]

Hi,yeah i will try to convince my GP for an appointment with the cardiologist soon,the thing i hate about it is at times,when i went to see the doctor,GP,they would just run the same old test,like check BP,heart rate then proceed to ECG then blood work,if all this returns normal,they are likely to tell you its anxiety.I also read that most POTS sufferer were actually write off mistakenly as an anxiety disorder because most doctors and cardiologist were not much aware of this POTS or ANS stuff,so basically when my ECG or 24 hour holter are fine then probably they will say its normal.And i am not sure its wise to have another tilt table test,cause i really dislike this test,so horrible because when they lied u flat on then tilt u upright and this is where i felt horrible,palpitaions and dizziness but BP remains normal range so yeah..they would just said you have anxiety,which i dont think i have..its like they keep telling me that its all in my head?

[r9c]

Hi megan and yes the increase heart rate of 30 bpms does indicate pots but the cardio wasnt concerned when i told him about the lightheaded and all he told me is that this is all not cardiac related and then sign me off with anxiety and even ask me to go for a counselling sesion for anxiety which i dint want as i am sure it is not anxiety causing this symptoms.the cardio dint gave me any meds for tacycardia as he said my 24 hour holter are normal.i will try to bring this pots thing to him maybe tommorow,sigh its hard sometimes they dont understand ur symptoms and then said that its just anxety all the time

[ParrotPal]

Meagan,  I am more confused than ever.  I was just tested at Mayo with autonomic reflex testing.  The electrophysiologist there confirmed POTS and dysautonomia after reviewing the tests, esp. the tilt table, which I knew would be the case because I have been measure my bp and heart rate for weeks prior to the Mayo tests and found that the heart rate would go down down down and heart rate up up up from laying, to sitting, to standing and then during standing would continue to see this happen after 2 min, 5 min, 10 min (if I could even stay vertical that long)  The neuro there that ordered the tests had his nurse call and tell me that all the tests were normal from a neurological perspective.  

I am very confused because your cardio told you that because u have dysautonomia you need to see a neuro. But my neuro put me in the hands of the electrophysiologist.  I think the problem is this:  the electrophysiologist said that a regular cardiologist at home isn't really going to be able to help me; they won't even know what do do for me and possibly what is even wrong.  BUT, all the local docs at home, incl. cardio told me to see neuro.